WEBVTT

NOTE
Podcast: Gespräche über LongCOVID
Episode: LCP04: Anhörung im US Senat zu Long COVID
Publishing Date: 2024-01-23T16:27:23+01:00
Podcast URL: https://locopoca.de
Episode URL: https://locopoca.de/lcp04-anhoerung-im-us-senat-zu-long-covid/

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The Senate Committee on Health, Education, Labor, and Pensions will come to order.

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Today, in my view, we're going to be talking about an issue that has not gotten

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the attention that it deserves from the medical community,

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from the media, and certainly from members of Congress, and that is the crisis of long COVID.

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And long COVID, as we all know, is the fact that after people get COVID,

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sometimes there are symptoms which simply do not disappear.

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And we're going to hear from our panelists in a moment about that.

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So what I would like to say to our panelists, and by the way,

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we have a full house here. We have an overflow room over there.

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And I suspect a lot of folks are watching this on TV.

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And on live stream. And I think there is the sense that something is going on

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in America, which is serious, that we're not addressing.

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So I just want to say to our panelists and all those who are dealing with long

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COVID, we hear what you're experiencing. We take it seriously.

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We think we have not, as a Congress, done anywhere near enough,

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and we hope to turn that around.

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The reality, as we're going to hear from our panelists in a moment,

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is that long COVID is a very serious illness that can have devastating consequences

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for those who contract it.

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In America today, the estimate is that some 16 million people throughout our

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country have long COVID.

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It affects people of all ages and all backgrounds, although we're going to hear

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a little bit of evidence that it disproportionately impacts people of color

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and lower income people.

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For too many, far too many people who were previously healthy,

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and we're going to hear from a former athlete this morning, who are leading

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active and productive lives,

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they have suddenly found themselves bedridden and grappling with strange, debilitating systems,

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that they could not conceive of having gotten as a result of long COVID.

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And the truth of the matter is, and we'll hear from our experts after we hear

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from the patients, that we still don't know why. We don't know the cause of the disease.

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But this is what we do know. We know that long COVID can include more than 200 symptoms,

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including serious cognitive impairment and severe cardiovascular and neurological

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problems that can continue for weeks, months, or even years after initial infection. infection.

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We know that people with long COVID have experienced a wide variety of chronic

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symptoms, including extreme fatigue, insomnia, migraines, brain fog,

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dizziness, shortness of breath, loss of smell or taste.

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And sometimes those diseases can be so debilitating that it leads literally to suicide.

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This case in my own state where a young man, previously healthy,

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he committed suicide as a result of illness. So let us be clear.

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The symptoms of long COVID are not minor inconveniences.

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They are debilitating conditions that affect the ability of people to work,

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to care for their families, and to live full lives.

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And here is what far too many do not know.

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Long COVID, and we're going to hear more about this this morning,

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can affect anybody anybody who has had COVID-19, from those who experienced

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mild symptoms to those who were severely ill.

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Further, although you may not have long COVID after your first infection,

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each reinfection can increase the risk of developing it.

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In other words, if you're under the impression that once you've gotten COVID,

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you don't need to worry about it ever again, you are mistaken.

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This is an escalating danger, particularly for those who have suffered repeated infections.

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It poses a severe threat to public health, and it demands our immediate and

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focused attention. Now, let's be clear.

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The impact of long COVID is not just a health issue. It is an economic one as well.

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It is estimated that as many as 4 million Americans are out of work due to long COVID.

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The annual cost of those lost wages alone is around $170 billion a year.

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So, what should we do about it? First, we must educate medical professionals

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on how to adequately diagnose long COVID, better understand the risks associated

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with it, and identify potential therapeutic options.

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Far too many patients, and I think we're going to hear a lot about this this

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morning, with long COVID have struggled to get their symptoms taken seriously.

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And far too many medical professionals have either dismissed or misdiagnosed

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their serious health problems.

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This crisis is made even worse by the fact that long COVID patients often require

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multiple specialists to treat their complex symptoms.

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The existing shortage of health care providers, from primary care to mental

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health providers, means that far too many Americans are unable to access affordable,

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high-quality care when they need it.

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That's another issue that some of us hope we can address in the near future.

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So let me just conclude by thanking our panelists, both the patients and the

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experts who we will be hearing from in a moment.

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And let me give the mic over to Senator Cassidy. Thank you, Chair Sanders.

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I'm a doctor, and I worked for a long time with people who had chronic fatigue

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syndrome or other things which were just difficult to put your finger on. this is my problem.

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And the frustration they had

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with real symptoms, but without real test findings was just remarkable.

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And so when I hear of long COVID, you have not my sympathy, my empathy,

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my understanding that this is something which can be devastating for someone.

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They feel like there's something out of their control dictating their life.

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And so I thank you for being here. I thank you for sharing your story.

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And for the researchers, I thank you for doing that research.

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Some of what I say will just be an echo of that which Senator Sanders says,

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because the facts are the facts.

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Most folks with COVID recover, but there is this subset which does not.

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And again, thank you for representing them.

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And we know that long COVID sometimes ends. That's the hope there,

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that there is not necessarily perpetual long COVID, COVID, but for some, it is.

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And again, that is a challenge that we have before us. So let's get the research better.

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Let's do what we can so that those who have it, somehow it does end.

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By the way, my own kind of episode of it is that after having COVID,

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I could really smell ammonia.

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And I'd walk into a hospital where they were using it to clean a place,

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and whoa, it just powered me.

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I hope you don't mind me saying this, but when my dog urinated,

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I could really smell that urine. It was just something that was just so acute.

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But fortunately, that has kind of waned away, and now it's much less than it used to be.

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But it still comes back as just a reminder, and that reminder tells me of that

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which you, you who have these symptoms more severely, just how you might experience that.

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So what are we doing? Well, Congress, I'm glad to say, has put significant funding towards this.

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We gave the Department of Health and Human Services a billion dollars to study

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long COVID. And last summer...

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This committee included a policy that would give further direction to HHS's

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long COVID research as part of the Pandemic and All Hazards Preparedness Act,

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which we call PAPA, the reauthorization.

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Now, we know, we're about to hear, NIH has received criticism about the effectiveness

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of their long COVID research program.

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The Researching COVID to Enhance Recovery are the recover initiative.

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Initiative, and that's why Congress needs to reauthorize PAPA.

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That gives us the ability to give not just money, but oversight as to how these

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programs are being conducted.

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Today, we're going to hear from some of our non-federal partners working on

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RECOVER and other HHS-funded projects to better understand how that work is

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going, what opportunities are there, what else can Congress do.

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And we're also going to hear from patients and from the mother of a patient

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as regards about your long COVID experience and allowing that to illuminate

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the conversations that we'll be having.

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I thank you for being here. I thank the committee for examining it.

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And, Mr. Chairman, I yield back.

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Thank you, Senator Cassidy. I don't have twice that. Okay. Fairer long COVID, a national emergency.

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All right. And a virus now. all right

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is Ms.

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Angela Vasquez from Los Angeles.

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Ms. Vasquez is an individual with Long COVID and the policy director for the

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Children's Partnership, a nonprofit organization that advocates for children's health equity.

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She has advocated for the Long COVID patient community since early in the pandemic.

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Ms. Vasquez, thanks very much for being with us.

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Thank you, Chairman Sanders, Ranking Member Cassidy, and members of the committee

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for having me here today.

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My name is Angela Mediquez-Vasquez, and today I'm here to speak as a disabled

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former athlete, long COVID patient, and former president of BodyPolitik,

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a grassroots patient-led health

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justice organization that was at the forefront of long COVID advocacy.

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Before we had to close due to a lack of funding, we connected and supported

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over 15,000 long COVID patients worldwide, the vast majority of whom were from the U.S.

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Before getting COVID-19 in

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Los Angeles in March 2020, I was a healthy runner for nearly two decades.

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What started as a mild illness progressed over weeks with an increasingly scary

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set of symptoms, including severe levels of blood clots, a series of mini strokes,

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extreme confusion and numbness in my face, hands, and legs that progressed to

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an inability to walk for several days, and new onset allergic anaphylaxis after after every meal.

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I had many clinical signs that something was wrong within weeks.

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High markers for an autoimmune disease, labs that showed my blood was severely

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clotted, markers of an over-activated and exhausted immune system.

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All were dismissed by doctors as anxiety, but now are being verified by the

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decades-long overdue research as clear evidence of infection-related pathology.

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I was left to fend for myself from bed that first year because I did not fit

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the profile of who was considered high risk.

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There wasn't even acknowledgement that infections could trigger chronic disease,

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something I knew when I first got sick, since I have a friend who has lived

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with chronic Lyme for years.

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I was a young person of color, not elderly and white.

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Now, even the CDC's data shows that Latina and LGBTQ plus communities are currently

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experiencing the highest levels of long COVID in the U.S.,

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and there is strong evidence that people of color are not prescribed antivirals

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like Paxlovid at the same rate as white people.

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The medical neglect and discrimination I face contributed to my current level

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of disability and continues to harm patients like me.

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With long COVID, I have several chronic diseases, including myalgic encephalomyelitis,

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also known as chronic fatigue syndrome, or ME-CFS.

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It's a neuroimmune condition whose hallmark symptom is post-exertion symptom

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exacerbation or post-exertion malaise, which means when I push myself past a dynamic threshold.

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I will experience a relapse of my worst symptoms like insomnia,

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brain fog and confusion, sleep apnea, heart palpitations, fevers, and severe migraines.

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I'm on 12 different prescription medications, including weekly IV treatments at the hospital.

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I have a strict pacing regimen that allows me to work from home but not do much else.

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I don't socialize, I don't enjoy my old hobbies, and I don't really leave my

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home, especially now that I'm considered high risk.

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I'm actually on the mild end of disability and now have access to a lot of medical support.

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Patients who have had ME-CFS for decades guided me to the right specialists

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who are familiar with infection-triggered diseases like dysautonomia,

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mast cell activation syndrome, and ME-CFS and how to manage them.

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My employer has been supportive in accommodating my needs, like frequent breaks

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and working from home where I can work while laying down.

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Low-income and patients of color who are more likely to get COVID-19,

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long COVID, and have the least access to health care, are likely experiencing

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the greatest levels of disability and medical neglect, and largely remain unidentified

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or unsupported with their new disabilities by the health care system,

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employers, and schools.

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Having insurance doesn't necessarily guarantee access to care.

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Long COVID patients with managed care plans especially are at the mercy of overwhelmed

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primary care doctors unfamiliar with infection-triggered sequelae who gatekeep

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access to specialists who can diagnose and manage the known pathologies.

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I recently had to assist a colleague, a health access lawyer,

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navigate her own HMO to get her son a long COVID dysautonomia diagnosis after

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two years of constant symptoms.

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There's also an escalating health access crisis with the return of Medicaid

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eligibility redetermination this year.

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Having to prove that you are still poor is a time-consuming,

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stressful, and bureaucratic process that contributes to millions of otherwise

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eligible people losing their health insurance because of application errors or misnotifications.

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Hundreds of thousands of disabled long COVID patients are new Medicaid recipients

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who may have moved or due to their financial or employment changes,

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or they may simply be too ill to understand and fill out the forms as I have been during relapse.

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My insurance keeps me stable enough

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to work and I need to work to keep my insurance, a horrible double bind.

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We are living through the largest mass disabling event in modern history.

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Not since the emergence of AIDS has there been such an imperative for large-scale

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change in health care, public health, and inequitable structures that bring

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exceptional risks of illness, suffering, disability, and mortality.

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COVID-19 is but the most recent driver of a known phenomenon of post-viral illnesses

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that cluster around a set of understudied, complex chronic diseases and are

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compounded for marginalized communities by social drivers of health.

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With enough political will, we can fund a long COVID moonshot that transforms

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clinical and community care for all of us. Thank you.

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Ms. Vasquez, thank you very much. Our next witness will be Mrs.

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Rachel Beal, and she will be recognized by Senator Kaine of Virginia.

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Thank you, Mr. Chair, and I so appreciate this hearing. And I'll actually introduce

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both Ms. Beal and Ms. Heim, both from Virginia. Virginia.

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The next witness will be Rachel Beal from Southampton County,

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Virginia, in the southeastern part of our state.

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Rachel was previously the Director of Human Relations at the Paul D.

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Camp Community College.

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She's a wife and mother to three children. Her husband, Steve, is here with her.

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Last year, she joined me at a Long COVID Summit that I hosted in Richmond, Virginia.

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The summit brought together patients and providers to discuss ways to improve patient centered care.

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Rachel's been living with long COVID for almost three years,

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and her story is one that's very focused upon the tremendous challenges of maintaining

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work with long COVID and also the tremendous challenges of negotiating the social

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security disability insurance system with long COVID.

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And so after Ms. Beal testifies, the next witness will be Nicole Heim from Winchester, Virginia.

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Nicole is the mother of three children and is here on behalf of her 16-year-old

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daughter who has long COVID.

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And Nicole will share with us her journey navigating the healthcare system and

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the education system as the parent of a child with long COVID,

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one that is so significantly challenging that it even required the family to

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move in order to be able to get the healthcare that their daughter needs.

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And so with that, Ms. Beal, Please, we're glad to have you. We're now open for

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your testimony, and Ms. Heim, you can follow.

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Chairman Sanders, Ranking Member Cassidy, and members of the committee,

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thank you for inviting me here to testify. It's an honor to be here.

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My name is Rachel Beal, and I live in Sedley, a small town in southeastern Virginia.

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I live with my husband, Stephen, who's here with me today, and my daughter and two sons.

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I tested positive for COVID on March 17th, 2021.

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I was sick with COVID for two weeks. I had a high fever and intense body aches.

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Although I didn't feel well, I managed my COVID at home.

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After the fever went away, I tried to return to my normal life.

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I worked as a human resources director at our local community college.

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I loved my job, but soon realized I was struggling.

00:30:27.594 --> 00:30:33.054
Even after my initial COVID infection, I continued to experience extreme fatigue,

00:30:33.294 --> 00:30:36.494
chronic pain, and neurological issues, to name a few.

00:30:36.894 --> 00:30:41.574
Before COVID, I was very healthy. I didn't expect to have problems recovering.

00:30:42.794 --> 00:30:46.874
When I realized I was struggling, I visited my primary care doctor.

00:30:47.214 --> 00:30:51.774
My doctor told me I needed more time to recover. I was stunned when he took

00:30:51.774 --> 00:30:53.374
me out of work for two weeks.

00:30:53.654 --> 00:30:58.274
I was very stressed about missing more work and worried that I would fall fall

00:30:58.274 --> 00:31:03.174
behind, but two weeks turned into two more weeks, and eventually my doctor diagnosed

00:31:03.174 --> 00:31:05.554
me with long COVID in May 2021.

00:31:06.574 --> 00:31:10.754
I was lucky to have a primary care doctor that believed me and believed my symptoms.

00:31:10.954 --> 00:31:14.314
I know not every person with long COVID has that same experience.

00:31:15.514 --> 00:31:19.314
My long COVID symptoms persisted beyond May 2021.

00:31:19.694 --> 00:31:23.234
I tried to go back to work part-time, but I just couldn't do it.

00:31:23.234 --> 00:31:27.534
For the first six months of my illness, I was on short-term disability.

00:31:27.934 --> 00:31:32.494
I tried over and over to work, but I could only manage an hour before I would

00:31:32.494 --> 00:31:34.314
start getting headaches and feel sick.

00:31:35.094 --> 00:31:39.514
Six months after I was diagnosed with COVID, I was transitioned to long-term

00:31:39.514 --> 00:31:42.894
disability, and at this point I was separated from my job.

00:31:44.034 --> 00:31:48.834
As someone who's helped countless employees on short-term disability and has

00:31:48.834 --> 00:31:52.934
transitioned some to long-term disability, I knew this would happen to me.

00:31:53.234 --> 00:31:57.614
I used to have the very same meetings with employees, but there is nothing that

00:31:57.614 --> 00:32:00.194
prepares you to hear the words that you no longer have a job.

00:32:00.774 --> 00:32:04.874
I loved my position at the college. I loved my career in human resources.

00:32:05.334 --> 00:32:08.214
Having to stop working because of my health has been devastating.

00:32:10.476 --> 00:32:15.896
I had a very full life before I got sick. Long COVID has affected every part of my life now.

00:32:16.116 --> 00:32:20.156
I wake up every day feeling tired, nauseous, and dizzy.

00:32:20.716 --> 00:32:23.596
I immediately start planning when I can lay down again.

00:32:24.216 --> 00:32:27.836
There are many days when I sleep all day, and on my good days,

00:32:27.916 --> 00:32:29.856
I get two to three hours of energy.

00:32:31.596 --> 00:32:35.296
I've had most of the symptoms of long COVID.

00:32:35.496 --> 00:32:41.276
The fatigue and chronic pain are the hardest to manage. It can be debilitating.

00:32:41.576 --> 00:32:43.756
I also have neurological issues.

00:32:44.076 --> 00:32:47.656
The executive function part of my brain seems to be affected the most.

00:32:48.236 --> 00:32:52.376
Being sick for so long has made my depression and anxiety worse.

00:32:52.716 --> 00:32:56.736
I've had low times, and when I don't feel good, I get depressed.

00:32:57.436 --> 00:33:02.276
I was just diagnosed with fibromyalgia, triggered by long COVID,

00:33:02.416 --> 00:33:05.156
yet another illness for which there's no cure.

00:33:06.576 --> 00:33:12.676
In December 2021, I filed my initial application for Social Security Disability Insurance.

00:33:13.156 --> 00:33:18.356
I've been denied twice. I'm now waiting for a hearing date with an administrative law judge.

00:33:19.056 --> 00:33:22.436
Long COVID is recognized by the Americans with Disabilities Act.

00:33:22.696 --> 00:33:27.036
It should be easier for someone with Long COVID to be approved for SSDI.

00:33:27.956 --> 00:33:31.196
I'm very fortunate that I have a supportive family. family.

00:33:31.876 --> 00:33:35.576
My husband has good health insurance. My doctors, procedures,

00:33:35.816 --> 00:33:39.596
most of my therapy is covered and I'm thankful for that.

00:33:39.756 --> 00:33:44.196
However, the co-pays add up and sometimes we can't pay them on time.

00:33:45.476 --> 00:33:50.336
My kids have grown accustomed to me being sick. We plan things around how I

00:33:50.336 --> 00:33:51.856
feel and my energy level.

00:33:52.056 --> 00:33:56.916
If there's something coming up like a birthday or holiday, I try to get as much

00:33:56.916 --> 00:33:58.556
rest as I can before the event.

00:33:59.076 --> 00:34:02.256
I know that I will have a crash for the next few days after,

00:34:02.316 --> 00:34:04.796
and I won't be able to do much but sleep.

00:34:05.836 --> 00:34:09.276
Sometimes it takes several weeks for me to get back to my baseline.

00:34:09.836 --> 00:34:13.396
For example, coming to testify today has been a huge effort,

00:34:13.536 --> 00:34:16.136
and I know that I will need several days to recover.

00:34:16.696 --> 00:34:20.456
We've gotten used to this lifestyle and living within my physical limitations.

00:34:21.711 --> 00:34:27.871
When I think about what comes next, I just don't know. Full recovery seems out of reach for me.

00:34:28.031 --> 00:34:32.351
I've been sick for almost three years, and it feels like there hasn't been much

00:34:32.351 --> 00:34:34.191
progress in long COVID research.

00:34:35.191 --> 00:34:38.671
I hope that Congress can help with that to move the research forward.

00:34:39.191 --> 00:34:42.671
But for now, I'm trying to make peace with my situation.

00:34:43.211 --> 00:34:47.891
It makes me sad to think about my future. This may be as healthy as I get.

00:34:52.411 --> 00:34:53.111
Ms. Haim.

00:34:56.431 --> 00:34:59.931
Chairman Sanders, Ranking Member Cassidy, members of the committee,

00:35:00.171 --> 00:35:04.051
thank you for the invitation to testify today on this important issue.

00:35:04.431 --> 00:35:08.191
My name is Nicole Haim, and my 16-year-old daughter has long COVID.

00:35:08.471 --> 00:35:12.231
In this room alone, I am sure there are countless stories about the impact of

00:35:12.231 --> 00:35:16.711
long COVID, but one story that is rarely shared is that of our children and

00:35:16.711 --> 00:35:19.931
the devastating physical and mental long-term effects it has. has.

00:35:20.111 --> 00:35:23.751
My daughter is just one example, and I am here to share her story in the hopes

00:35:23.751 --> 00:35:25.031
that it may help other families.

00:35:25.471 --> 00:35:30.771
In September 2021, my daughter, 14 years old at the time, contracted COVID.

00:35:31.091 --> 00:35:34.671
Before COVID, she was a relatively healthy, typical teenage girl,

00:35:34.831 --> 00:35:37.391
excelling at school with a robust social life.

00:35:37.651 --> 00:35:41.431
A month following her recovery, I received a panicked phone call from the school

00:35:41.431 --> 00:35:45.531
nurse saying my child was short of breath, her pulse was extremely high,

00:35:45.651 --> 00:35:47.511
and her arms and legs were locked in place.

00:35:47.831 --> 00:35:50.691
This is the kind of phone call no parent ever wants to receive.

00:35:51.171 --> 00:35:55.871
After seeing she was hypoxic, low blood oxygen, at the local ER,

00:35:55.951 --> 00:35:59.731
they transferred her via ambulance three hours away to a larger hospital,

00:35:59.891 --> 00:36:02.831
where she was admitted and received a long COVID diagnosis.

00:36:03.751 --> 00:36:07.631
Following this diagnosis, we were fortunate to be introduced to and get into

00:36:07.631 --> 00:36:12.391
the long COVID clinic at Children's National Hospital here in Washington, D.C.

00:36:13.060 --> 00:36:16.500
After a few months of waiting and jumping through prior authorization hoops

00:36:16.500 --> 00:36:19.380
with Medicaid, we were able to begin seeing Dr.

00:36:19.400 --> 00:36:24.920
Alexandra Yontz, the lead infectious disease doctor at Children's who coordinates

00:36:24.920 --> 00:36:27.640
the team, which includes multiple specialists.

00:36:28.140 --> 00:36:32.320
At the time of our initial visit with them, my daughter was experiencing a wide

00:36:32.320 --> 00:36:35.380
range of symptoms, including extreme fatigue,

00:36:35.740 --> 00:36:39.220
low blood pressure, increased heart rate, severe joint pain,

00:36:39.400 --> 00:36:43.460
daily nausea and vomiting, severe brain fog, depression, and more.

00:36:43.740 --> 00:36:48.460
We learned about and enrolled in the Joint Children's National and NIH Pediatric

00:36:48.460 --> 00:36:51.140
COVID Outcomes Study led by Dr.

00:36:51.740 --> 00:36:56.160
Roberta DiBiase. This is the only study of its kind in the country where a thousand

00:36:56.160 --> 00:37:00.820
children are evaluated for three years following enrollment to determine long-term

00:37:00.820 --> 00:37:02.760
effects on children with COVID infection.

00:37:03.340 --> 00:37:06.540
Long COVID stripped away my daughter's life as she knew it.

00:37:06.660 --> 00:37:10.500
She was a straight-A honors student, an active member of the school's marching

00:37:10.500 --> 00:37:12.760
band and had an active friend group.

00:37:12.980 --> 00:37:16.220
Now she is isolated and struggles to do her schoolwork.

00:37:16.440 --> 00:37:19.940
Because of the severity of her symptoms, she is no longer able to physically

00:37:19.940 --> 00:37:22.620
participate in the marching band or go to school.

00:37:23.040 --> 00:37:27.700
Instead of looking forward to a high school graduation, my 16-year-old is working

00:37:27.700 --> 00:37:29.540
slowly on her GED from home.

00:37:29.920 --> 00:37:34.480
The mild depression and anxiety she struggled with prior to COVID has only been

00:37:34.480 --> 00:37:40.460
intensified and has led to increased panic attacks and hospitalization for suicidal ideations.

00:37:40.920 --> 00:37:44.160
We so frequently hear about the physical effects of long COVID.

00:37:44.420 --> 00:37:48.040
Unfortunately, we rarely discuss the mental health impact it has.

00:37:48.300 --> 00:37:51.100
It is especially concerning when considering our children.

00:37:51.420 --> 00:37:55.580
Having a chronic illness as an adult is difficult, but it is more challenging

00:37:55.580 --> 00:37:58.800
and takes a greater toll, a much greater toll on a child.

00:37:59.000 --> 00:38:03.340
So much of our children's lives revolve around school, extracurricular activities,

00:38:03.620 --> 00:38:08.640
sports, and friends, activities that continue for my daughter's peers, but not for her.

00:38:09.260 --> 00:38:12.920
After two years of treatment, my daughter has seen some symptom improvement.

00:38:13.200 --> 00:38:18.320
However, we are still experiencing symptoms and struggling each day to adjust to this new norm.

00:38:18.640 --> 00:38:22.660
We are learning more and more every day. In fact, we recently discovered she

00:38:22.660 --> 00:38:26.220
has micro blood clots, which will require her to be on daily blood thinners.

00:38:26.500 --> 00:38:30.540
We are optimistic that she will fully recover one day, but we remain concerned

00:38:30.540 --> 00:38:34.820
that her current treatment regimen may be necessary for the rest of her life.

00:38:35.460 --> 00:38:40.160
Clinics and studies like those done at Children's are crucial to understanding

00:38:40.160 --> 00:38:43.460
this infection and its unique impact on our children.

00:38:43.960 --> 00:38:47.740
I feel so grateful for the treatment my daughter is receiving at Children's,

00:38:47.740 --> 00:38:51.660
but I know there are many other parents and children struggling not only with

00:38:51.660 --> 00:38:54.700
the long COVID diagnosis, but also to find symptom relief.

00:38:55.680 --> 00:38:59.660
In reflecting on our experience, my recommendations to this committee are simple. bomb,

00:39:00.349 --> 00:39:04.009
Create medical screening tools to help identify long COVID.

00:39:04.649 --> 00:39:07.509
Increase awareness around pediatric long COVID.

00:39:07.929 --> 00:39:12.169
Allow physicians caring for long COVID patients to have telemedicine appointments

00:39:12.169 --> 00:39:16.729
in states they are not licensed in for both the initial visits and for follow-up.

00:39:17.029 --> 00:39:20.109
Encourage the committee to meet with the hospitals that are running the long

00:39:20.109 --> 00:39:23.249
COVID clinics to understand the level of services that they provide.

00:39:23.809 --> 00:39:27.929
I would tell any parent that if their child's existing conditions worsen or

00:39:27.929 --> 00:39:32.169
they develop persistent and or new symptoms after COVID, they should contact

00:39:32.169 --> 00:39:33.949
their doctor to discuss long COVID.

00:39:34.269 --> 00:39:37.989
I look forward to a day when doctors not only know more about long COVID,

00:39:38.089 --> 00:39:42.029
but can also quickly identify patients to provide timely treatment.

00:39:42.329 --> 00:39:46.629
I hope studies like these at Children's National Hospital are continually supported

00:39:46.629 --> 00:39:50.049
to lead new treatment options for patients like my daughter.

00:39:50.229 --> 00:39:53.649
I'd like to offer myself as a resource to this committee and our healthcare

00:39:53.649 --> 00:39:55.889
system as we continue to address long COVID.

00:39:56.149 --> 00:39:59.649
Thank you for the opportunity to share our story. I look forward to our discussion.

00:40:00.869 --> 00:40:05.529
Well, I think I speak for the whole committee in thanking all three of you for

00:40:05.529 --> 00:40:11.109
being here and for educating us and the American people about what you and,

00:40:11.129 --> 00:40:13.449
in your case, your child has experienced.

00:40:14.629 --> 00:40:19.969
Let me begin my questioning with Ms. Vasquez. Um...

00:40:21.748 --> 00:40:25.848
And I know you have experience, obviously, not only with yourself,

00:40:25.948 --> 00:40:29.788
but you have interacted with many, many hundreds of people with long COVID.

00:40:31.748 --> 00:40:38.088
Is one of the frustrations that the medical community or others do not believe,

00:40:38.228 --> 00:40:41.008
in fact, what you are experiencing?

00:40:41.268 --> 00:40:44.068
Is that one of the problems that you're going through?

00:40:44.508 --> 00:40:51.628
Yes, absolutely. Absolutely. I daily, it seems like, hear from patients who

00:40:51.628 --> 00:40:54.428
have been experiencing long COVID symptoms,

00:40:54.808 --> 00:40:59.808
you know, symptoms that are clearly as a result of their infection with COVID

00:40:59.808 --> 00:41:06.168
being dismissed by doctors as anxiety, as pandemic stress.

00:41:07.128 --> 00:41:10.988
And it's, I think,

00:41:11.048 --> 00:41:18.088
quite alarming that That even with the media attention that it has gotten and

00:41:18.088 --> 00:41:22.368
then all of the grassroots advocacy that we've done to educate,

00:41:22.488 --> 00:41:27.068
you know, providers and the community about long COVID, it is not enough. enough.

00:41:27.808 --> 00:41:31.488
There really needs to be, I think, a stronger,

00:41:31.708 --> 00:41:39.148
louder government campaign around long COVID for public health and as well as

00:41:39.148 --> 00:41:43.628
clinical education to providers, particularly primary care.

00:41:43.868 --> 00:41:47.848
I mean, you said yourself that primary care is overwhelmed.

00:41:48.348 --> 00:41:54.388
It's really, really difficult to assess a patient in 15 minutes and get them

00:41:54.388 --> 00:41:56.848
everything they need. Let me jump to Ms.

00:41:57.448 --> 00:42:01.588
Beale and Ms. Helm just to pick up where Ms. Vasquez left off.

00:42:04.184 --> 00:42:13.844
How has your, what kind of impact, what kind of effect have you had in terms

00:42:13.844 --> 00:42:15.404
of reaching out to the medical community?

00:42:15.544 --> 00:42:19.004
Have you found a doctor's understanding of the problem?

00:42:19.204 --> 00:42:23.724
Have you been able to get the help you need, Ms. Beal, for your symptoms or

00:42:23.724 --> 00:42:25.304
others in a similar place?

00:42:25.804 --> 00:42:28.164
Thank you so much for your question, Senator.

00:42:28.924 --> 00:42:36.844
Early on in my long COVID journey, it was difficult to find a doctor that knew what long COVID was.

00:42:37.144 --> 00:42:42.644
And I even had a doctor tell me that she didn't believe that long COVID was real.

00:42:43.244 --> 00:42:47.524
And that's hard when you know you're sick and you know it's real,

00:42:47.684 --> 00:42:51.324
and you have a medical professional telling you that they don't believe it.

00:42:51.404 --> 00:42:55.064
It's hard to get anything out of a conversation like that.

00:42:56.724 --> 00:43:03.704
I've become more selective in which which physicians I see, I ask every single

00:43:03.704 --> 00:43:06.224
one of them, have you heard of long COVID?

00:43:06.484 --> 00:43:08.724
Are you treating any other patients with long COVID?

00:43:09.344 --> 00:43:15.024
And I think in the last year, more of the providers are more aware of long COVID,

00:43:15.124 --> 00:43:17.344
so that's been very helpful.

00:43:18.684 --> 00:43:22.864
Ms. Helm, you've introduced us to something I think that's even less attention

00:43:22.864 --> 00:43:27.464
than the overall crisis of long COVID, and that is how it impacts young people.

00:43:28.464 --> 00:43:32.304
Um i i guess you have not by

00:43:32.304 --> 00:43:36.044
choice become somewhat of an expert on covid and

00:43:36.044 --> 00:43:41.304
young people can you tell us a little bit about what you have learned as to

00:43:41.304 --> 00:43:45.664
how many kids are experiencing long covid whether they're getting the kind of

00:43:45.664 --> 00:43:52.664
treatment that they need how it impacts you know a teenager's life speak it to the mic there please.

00:43:54.161 --> 00:43:57.961
Just being on social media and connecting with all these different groups of

00:43:57.961 --> 00:44:01.841
parents, a lot of times you get to talk directly with other parents and hear their stories.

00:44:01.961 --> 00:44:05.201
And there's a lot of parents that are struggling to get treatment for their children.

00:44:05.341 --> 00:44:10.541
I mean, they're trying all kinds of different, you know, medications,

00:44:10.801 --> 00:44:12.701
supplements, even hyperbaric chambers.

00:44:12.981 --> 00:44:16.501
I mean, they're doing anything to try and help their children feel better.

00:44:17.481 --> 00:44:21.721
And I think the biggest thing in relation to the question about the doctors

00:44:21.721 --> 00:44:24.821
I come across, The doctors I've been around are not dismissive.

00:44:24.921 --> 00:44:26.581
They just say, I don't know.

00:44:26.921 --> 00:44:30.581
I hear that a lot from doctors. I don't know. I don't know. I don't know.

00:44:30.961 --> 00:44:36.461
So what I do is because I've got the information from the clinic and the study

00:44:36.461 --> 00:44:38.201
and stuff, I tell them what I know.

00:44:38.321 --> 00:44:41.921
I was at the gastroenterologist yesterday and I said, did you know COVID lives

00:44:41.921 --> 00:44:43.961
in your gut for months after infection?

00:44:44.461 --> 00:44:47.821
And she said, no, I didn't know that. And I said, well, tell everybody it's your office.

00:44:49.101 --> 00:44:55.501
And then she looked at me and she said, Yeah, well, she looked at me and she

00:44:55.501 --> 00:44:56.701
said, well, how do I do that test?

00:44:56.901 --> 00:45:00.361
I don't even know how to order that test to see if they have COVID in their school.

00:45:01.241 --> 00:45:04.881
And so I think that's part of the problem is the doctors need the information

00:45:04.881 --> 00:45:06.721
so that they can help the patients.

00:45:07.001 --> 00:45:10.421
Because they just don't know that COVID is doing this to people, I don't think.

00:45:10.721 --> 00:45:14.001
They're shocked usually when I tell them the stuff that I've learned.

00:45:14.561 --> 00:45:19.581
All right, I'm running out of time. My last question is, what good question did I not ask any of you?

00:45:24.421 --> 00:45:25.341
All right, Donna.

00:45:52.821 --> 00:45:54.601
Uh, we, uh...

00:45:55.696 --> 00:45:59.916
We know this stuff backwards and forwards, not only because we live it,

00:45:59.976 --> 00:46:02.656
but so many of us have had to do our own research.

00:46:02.776 --> 00:46:09.496
I am heavily invested in PubMed and Google Scholar. I can read a paper.

00:46:09.636 --> 00:46:11.836
I send papers to my providers.

00:46:12.376 --> 00:46:17.996
We are experts from a lived experience and because some of us are getting in

00:46:17.996 --> 00:46:20.036
there and doing the research ourselves.

00:46:20.276 --> 00:46:23.156
So that's why it's important to include us.

00:46:24.436 --> 00:46:29.136
See that i knew i would ask a brilliant question that was you senator custody

00:46:29.136 --> 00:46:35.036
i defer to senator dr roger marshall well well thank you chairman and ranking

00:46:35.036 --> 00:46:38.156
member again and this is personal for me,

00:46:39.136 --> 00:46:44.196
um one of my loved ones is one of those 16 million people that suffered from long covid,

00:46:45.196 --> 00:46:51.336
incapacitated for some two years uh people often ask me well what is what's

00:46:51.336 --> 00:46:56.536
long covid And I think that we have some loose definitions, but I tell people

00:46:56.536 --> 00:46:58.516
it's like if you had mono that never goes away.

00:46:58.936 --> 00:47:02.836
There's a brain fog. There's aches and pains. And sometimes the pains follow

00:47:02.836 --> 00:47:07.036
nerve tracts, the vagus nerve and the femoral nerve.

00:47:07.236 --> 00:47:11.196
And maybe it's a venous process and there's micro blood clots.

00:47:12.656 --> 00:47:16.576
Like you, we've taken my loved one to dozens of doctors.

00:47:16.736 --> 00:47:22.336
I've talked to 40, 50, 60, 80. I've read everything there is to read about long COVID.

00:47:22.616 --> 00:47:26.396
Talk to other members of the Senate that have had long COVID. What are they doing?

00:47:27.796 --> 00:47:33.716
So I share your frustration. I am frustrated that our CDC seems to be more focused

00:47:33.716 --> 00:47:39.456
on, I guess, vaccines than they are treatment for long COVID.

00:47:39.616 --> 00:47:42.396
I mean, simple questions still have not been answered. If you take Paxil a bit

00:47:42.396 --> 00:47:46.696
early on, even though you're young and healthy, does it help decrease the incidence of long COVID?

00:47:46.796 --> 00:47:50.376
I don't think we know the answer to that. Do vaccines increase or decrease the

00:47:50.376 --> 00:47:52.756
incidence of long COVID? If you've already had COVID.

00:47:54.724 --> 00:47:58.344
Does the vaccine increase or decrease your risk of long COVID?

00:47:58.544 --> 00:47:59.804
You know, we don't know the answers.

00:48:01.044 --> 00:48:04.404
So I couldn't be more frustrated that it's vaccines, vaccines,

00:48:04.564 --> 00:48:09.824
vaccines, rather than focused on diagnosis and treatment. I don't need epidemiology anymore.

00:48:10.184 --> 00:48:13.224
I need diagnosis and treatment.

00:48:13.404 --> 00:48:19.164
What blood tests should we be ordering? What is the standard of care when a person has long COVID?

00:48:19.264 --> 00:48:21.404
What blood work should we be ordering?

00:48:21.904 --> 00:48:23.564
Now, I'm going to give you some hope, though.

00:48:24.724 --> 00:48:29.984
I think in the past month, I finally have talked to a couple physicians that

00:48:29.984 --> 00:48:31.544
get it, that understand it.

00:48:32.124 --> 00:48:36.784
Dr. Bob Redfield from the former CDC is one of those people that has dedicated

00:48:36.784 --> 00:48:39.544
his life now to figure out what's causing long COVID.

00:48:39.684 --> 00:48:43.604
I think they're getting closer, but I couldn't be more disappointed in what

00:48:43.604 --> 00:48:47.644
is coming out of the CDC right now, that they're not cooperating adequately

00:48:47.644 --> 00:48:49.604
enough with private doctors.

00:48:49.864 --> 00:48:52.784
Trust me, these doctors, we want to help. help

00:48:52.784 --> 00:48:55.724
we want to help you but we don't know we don't

00:48:55.724 --> 00:48:59.824
we don't have a cure for mono we don't have cures for the flu so i'm

00:48:59.824 --> 00:49:03.184
frustrated and mr chairman what i'm really concerned

00:49:03.184 --> 00:49:06.004
about is more recent news coming from across

00:49:06.004 --> 00:49:09.324
the from foreign lands that just recently

00:49:09.324 --> 00:49:16.524
learned that uh dr lily ran two weeks before we knew what covid was over here

00:49:16.524 --> 00:49:23.344
a sequence that our own nih that she had submitted the DNA sequence for COVID

00:49:23.344 --> 00:49:27.924
to our own NIH on December 28th, but the NIH deleted it.

00:49:28.524 --> 00:49:33.284
That would have given us two more weeks to work towards a vaccine and curing

00:49:33.284 --> 00:49:34.944
and preventing the problem.

00:49:35.764 --> 00:49:40.164
And then I find out she was on the eco-health grant from NIH,

00:49:40.224 --> 00:49:43.264
our own American dollar. She's working for the American government.

00:49:44.204 --> 00:49:48.864
She has the sequence. She gives it to us, and we delete it.

00:49:51.024 --> 00:49:53.704
Remember, it only took two days for Moderna to develop a vaccine.

00:49:53.824 --> 00:49:57.544
If we would have had the vaccine earlier, my point is how many long COVIDs would

00:49:57.544 --> 00:50:01.264
we have prevented if we knew that this was person-to-person transmission,

00:50:01.504 --> 00:50:04.064
which the Chinese certainly did by then.

00:50:04.124 --> 00:50:06.164
If we would have known this was person-to-person transmission,

00:50:06.424 --> 00:50:13.284
that this came from a laboratory, that it was a superbug, maybe we could have

00:50:13.284 --> 00:50:16.404
prevented some of these 16 million people. people.

00:50:17.384 --> 00:50:21.044
It points out that we don't have a good grasp of our grants.

00:50:21.344 --> 00:50:25.864
So we award these grants, people are doing research, and we don't have a good

00:50:25.864 --> 00:50:27.184
grasp of what they're doing.

00:50:28.944 --> 00:50:32.264
And I'm even more concerned recently, again, coming out of China,

00:50:32.324 --> 00:50:34.004
that their viral gain of function continues.

00:50:34.284 --> 00:50:38.724
This week they found they've made a COVID virus that attacks the brain more

00:50:38.724 --> 00:50:41.504
so than human lung cells and human veins.

00:50:41.784 --> 00:50:45.344
That's why we've called for a viral gain of function moratorium until we can

00:50:45.344 --> 00:50:48.804
wrap our arms around this horrible situation.

00:50:49.184 --> 00:50:54.064
Who here can say the benefits of the virus that looks like COVID that attacks

00:50:54.064 --> 00:50:56.464
the brain more over any other cells?

00:50:56.784 --> 00:51:01.284
What are the benefits of that type of research? People just can't show me what the benefits that are.

00:51:02.024 --> 00:51:06.424
Well, I guess my question for you all, and I think it goes to the mental health

00:51:06.424 --> 00:51:09.864
of my patients, my family members, the people I talk to.

00:51:10.444 --> 00:51:13.244
If we knew where COVID came from and what are

00:51:13.244 --> 00:51:17.784
we doing to prevent it in this time is your daughter your son i'm sorry that

00:51:17.784 --> 00:51:22.724
your daughter you know the her this is definitely a mental health impact on

00:51:22.724 --> 00:51:27.584
people as well are you frustrated with the cdc that we don't have better research

00:51:27.584 --> 00:51:31.084
out there diagnosis treatment are you frustrated that we're not doing more to

00:51:31.084 --> 00:51:32.984
stop this next round of covid from coming.

00:51:37.386 --> 00:51:41.886
I just want them to do something about it now going forward and to acknowledge

00:51:41.886 --> 00:51:44.526
that it's real and how it's affecting the children.

00:51:44.786 --> 00:51:48.026
I get it. Thank you. Thank you so much, everybody. Senator Murray.

00:51:49.286 --> 00:51:52.466
Well, thank you very much, Chair Sanders. I'm really glad we're having this

00:51:52.466 --> 00:51:56.326
really important hearing, and I want to thank all of our witnesses for being here today.

00:51:56.606 --> 00:52:00.906
You know, since the COVID-19 pandemic, I have really been pressing for more

00:52:00.906 --> 00:52:05.006
NIH funding to help us better better understand and treat long COVID.

00:52:05.146 --> 00:52:09.786
And I continue to fight for strong funding bills for health research and public

00:52:09.786 --> 00:52:14.466
health infrastructure as we are now negotiating our current funding bills.

00:52:14.786 --> 00:52:20.626
Last Congress, I fought very hard to pass my Prevent Pandemics Act to make sure

00:52:20.626 --> 00:52:24.726
that we would not be caught so unprepared for whatever the next pandemic hits.

00:52:24.926 --> 00:52:29.086
But there is a lot more that we need to do. As all of you well know,

00:52:29.326 --> 00:52:30.906
we need better information.

00:52:31.126 --> 00:52:35.166
We need better care. We we need better treatment, we need better public awareness

00:52:35.166 --> 00:52:36.986
to help with prevention.

00:52:37.346 --> 00:52:42.466
And I know for patients dealing with this, long COVID is a serious life-altering

00:52:42.466 --> 00:52:47.586
condition, and one we are, as many of you just said, learning about every single day.

00:52:47.686 --> 00:52:51.946
So I really appreciate all of you being here and sharing your stories.

00:52:52.466 --> 00:52:57.646
You know, throughout the COVID-19 pandemic, we know that women were likely to

00:52:57.646 --> 00:53:02.906
be exposed to COVID-19 frontline essential workers, our daycare workers,

00:53:03.146 --> 00:53:07.026
our nurses, and many of them living in underserved communities.

00:53:07.346 --> 00:53:13.226
Now, I believe in general that our country needs to take women's health more seriously.

00:53:13.646 --> 00:53:17.166
So I think this question I have for you is extremely important.

00:53:17.626 --> 00:53:21.786
Given the barriers women already face in getting quality care,

00:53:21.786 --> 00:53:27.286
What are some of the unique challenges you all may have seen as women seeking

00:53:27.286 --> 00:53:29.586
care and treatment for long COVID complications?

00:53:29.846 --> 00:53:31.466
And Ms. Vasquez, I'll start with you.

00:53:32.813 --> 00:53:38.913
Yes, I absolutely believe my gender and my ethnicity played a role in not being

00:53:38.913 --> 00:53:43.233
able to get care, especially at the beginning of the pandemic when hospitals

00:53:43.233 --> 00:53:47.593
were absolutely rationing care, even if it wasn't an official policy.

00:53:47.873 --> 00:53:54.773
I was told multiple times that unless I was elderly and in need of a ventilator,

00:53:54.873 --> 00:53:59.413
that I needed to go home and save beds for people who were really sick.

00:53:59.413 --> 00:54:05.893
And this was after getting labs showing that I was severely blood clotted.

00:54:05.993 --> 00:54:12.053
I was told that that was a false positive and that I didn't actually need any

00:54:12.053 --> 00:54:14.293
care. I was sent home as a psych patient.

00:54:15.013 --> 00:54:20.653
And that continues to happen to women, especially women of color,

00:54:20.813 --> 00:54:21.873
Black women especially.

00:54:22.353 --> 00:54:25.873
And I kept going back to the emergency room because I told myself,

00:54:26.013 --> 00:54:27.893
I am not going to be a statistic.

00:54:28.713 --> 00:54:33.553
And I think, unfortunately, those statistics are growing. Ms. Beal?

00:54:36.593 --> 00:54:41.773
Thank you for your question, Senator. For me, early on, I did have a doctor

00:54:41.773 --> 00:54:45.653
that kept saying that it was just depression and anxiety.

00:54:45.953 --> 00:54:49.213
That's why I was achy. That's why I was tired. It's just depression.

00:54:49.473 --> 00:54:54.233
It's just anxiety. Go see a therapist. Let's work on it from that angle.

00:54:54.413 --> 00:55:01.433
And that's very discouraging as a woman or any patient that it's all in my head.

00:55:01.573 --> 00:55:03.313
I know it's not all in my head.

00:55:03.553 --> 00:55:06.753
But this doctor is trying to make me feel like it's all in my head.

00:55:06.873 --> 00:55:08.193
And it's very discouraging.

00:55:09.433 --> 00:55:16.213
You know, there were some instances where I requested some testing and there

00:55:16.213 --> 00:55:18.093
was a little bit of pushback on that.

00:55:19.293 --> 00:55:26.013
And I think that that was coming into play of, you know, the woman being a woman

00:55:26.013 --> 00:55:30.313
and I guess kind of brushing me aside a little bit more.

00:55:30.313 --> 00:55:35.453
One of the things I needed was blood work to test my ferritin levels.

00:55:35.733 --> 00:55:40.493
And the doctor kept testing just the iron, but it's separate tests.

00:55:41.093 --> 00:55:48.733
And I found out that I was anemic. But if I hadn't kept pushing that with him, I wouldn't have come.

00:55:48.753 --> 00:55:52.593
I wouldn't have been able to get that conclusion. Miss him.

00:55:54.527 --> 00:55:57.787
I don't think that's something I can really speak on for my daughter. Okay.

00:55:57.927 --> 00:56:03.327
Well, let me ask you about access because a lot of patients with long COVID

00:56:03.327 --> 00:56:07.107
in my state of Washington have told me that they have really limited access

00:56:07.107 --> 00:56:09.867
to quality treatment and rehab services.

00:56:09.987 --> 00:56:14.247
The University of Washington's post-COVID rehab and recovery clinics is one

00:56:14.247 --> 00:56:16.467
of the few that we have in a very large state.

00:56:17.047 --> 00:56:21.627
I know you all have lived through the challenge of navigating our health care

00:56:21.627 --> 00:56:26.407
system. What do you want to see done at the federal level to expand access to

00:56:26.407 --> 00:56:28.087
quality care for long COVID patients?

00:56:29.067 --> 00:56:30.867
Any of you? Ms. Vasquez?

00:56:32.047 --> 00:56:40.987
Yes. I really feel like we need to broadly disseminate sort of basic diagnostic

00:56:40.987 --> 00:56:44.367
and screening tools to, again, primary care physicians.

00:56:44.567 --> 00:56:48.787
They are the front line. They're the first person that folks go to after an

00:56:48.787 --> 00:56:51.807
infection with these, you know, somewhat nebulous symptoms.

00:56:52.067 --> 00:56:58.447
These conditions have existed. We have clinical diagnostic tools to be able

00:56:58.447 --> 00:57:02.507
to diagnose and then manage these conditions.

00:57:02.707 --> 00:57:06.987
That needs to be disseminated widely. And I think there's also a role to play

00:57:06.987 --> 00:57:14.087
through HHS and guidance to state Medicaid agencies to really hold contracted

00:57:14.087 --> 00:57:18.167
managed care plans accountable to identifying and treating long COVID adequately.

00:57:18.447 --> 00:57:21.027
Okay, very helpful. Either of you want to comment?

00:57:22.967 --> 00:57:26.527
I am out of time. I wanted to ask Ms. Heim very quickly.

00:57:26.767 --> 00:57:31.227
We know that the education system during COVID, a lot of kids suffered.

00:57:31.227 --> 00:57:36.807
We're still dealing with a lot of the significant impact of learning throughout that time.

00:57:37.727 --> 00:57:41.407
Your daughter's now, how are you educating her with long COVID?

00:57:41.567 --> 00:57:43.927
Is that a challenge still for parents? Yes.

00:57:44.939 --> 00:57:49.779
We had transitioned from in-person school to a homebound program, which most states have.

00:57:50.339 --> 00:57:55.199
But even that was too much for her to be able to do with the anxiety.

00:57:55.239 --> 00:57:59.259
The four core classes, and they had tutors that would meet with them.

00:57:59.379 --> 00:58:02.699
But a lot of the teachers weren't cutting her any slack.

00:58:02.879 --> 00:58:05.619
They weren't, you know, giving her less work.

00:58:05.819 --> 00:58:07.899
They weren't sympathetic at all.

00:58:08.319 --> 00:58:12.159
We're dealing with learning loss from COVID in general, And I think we need

00:58:12.159 --> 00:58:16.699
to highlight it with long COVID patients as well, especially young kids. So thank you.

00:58:17.359 --> 00:58:21.659
Senator Custody? I will defer to Senator Braun. Thank you.

00:58:23.439 --> 00:58:28.719
When I look at what we do here on this committee, I think whatever the particular

00:58:28.719 --> 00:58:34.039
topic is, we need to weave it always into maybe a little broader discussion.

00:58:34.039 --> 00:58:39.599
And when you look at COVID coming along, catching our country by surprise the way it did,

00:58:39.759 --> 00:58:49.819
I think a big part of the trickiness of navigating through it was what is true and what isn't.

00:58:49.879 --> 00:58:52.639
How much transparency is there?

00:58:53.279 --> 00:59:00.399
I know in my own business that I ran that I could only look back on in terms of what they were doing.

00:59:01.339 --> 00:59:07.859
We took it seriously. Just like we took health care seriously 15 years ago when

00:59:07.859 --> 00:59:14.039
I was sick and tired of a health care system that was telling us how lucky we

00:59:14.039 --> 00:59:17.359
were that our premiums are only going up 5 to 10 percent a year.

00:59:18.032 --> 00:59:22.572
Along with zero transparency into the system.

00:59:22.772 --> 00:59:28.312
I think COVID, you want to find a silver lining to it, shows you how when you

00:59:28.312 --> 00:59:33.632
really get into a predicament or it's just laced with uncertainty,

00:59:34.012 --> 00:59:40.792
novelty, and then you try to remediate it through a system that you know is

00:59:40.792 --> 00:59:45.532
not real good at taking care of the standard operating stuff.

00:59:45.692 --> 00:59:47.532
No one should go broke in this country.

00:59:48.032 --> 00:59:51.832
Because they get sick or have a bad accident. I think most of us,

00:59:51.872 --> 00:59:55.892
thank you. And that should be something we all agree with.

00:59:56.052 --> 00:59:59.272
Then it gets down to what are you going to do about it?

00:59:59.432 --> 01:00:04.452
So I want to highlight something that the chair of the committee and I are doing.

01:00:04.532 --> 01:00:08.492
And then the question will be around that as you navigated through your own

01:00:08.492 --> 01:00:10.772
complications with COVID.

01:00:11.412 --> 01:00:16.612
To me, when I I wrestled with it 15 years ago. There was zero transparency.

01:00:17.412 --> 01:00:23.552
You basically hoped that your insurance plan was going to take care of it.

01:00:23.612 --> 01:00:27.572
You never found out the net result until three, four months later when you open

01:00:27.572 --> 01:00:32.632
the envelope up with trepidation to see how much it was going to cost you. That's no good.

01:00:33.392 --> 01:00:38.392
We've got a bill called healthcare transparency competition,

01:00:38.392 --> 01:00:40.392
competition, all the things I've been talking about.

01:00:40.632 --> 01:00:44.412
So there are bigger things working here in the U.S. Senate. And thank you,

01:00:44.412 --> 01:00:48.132
Chairman, for doing that alongside many of us that are interested in it.

01:00:48.392 --> 01:00:51.672
Let's start on the left side of the, down here.

01:00:52.132 --> 01:00:57.292
Tell me, once you got into your own predicament fighting COVID,

01:00:57.532 --> 01:01:02.572
was it easy dealing with the system itself when you were were trying to see

01:01:02.572 --> 01:01:03.872
what your alternatives were.

01:01:05.492 --> 01:01:09.792
Could you actually quantify that into how much it was going to cost?

01:01:10.032 --> 01:01:12.472
And tell me what that was about.

01:01:13.592 --> 01:01:17.152
The costs of living with long COVID are high.

01:01:17.352 --> 01:01:23.312
I have an excellent employer-based health plan, a PPO, and I still last year

01:01:23.312 --> 01:01:28.912
spent $4,000 out of pocket on medically necessary care.

01:01:29.052 --> 01:01:35.612
This was not alternative care or they were things that were not covered that

01:01:35.612 --> 01:01:37.332
were denied by my health plan.

01:01:37.672 --> 01:01:41.892
And that was for a variety of reasons.

01:01:42.052 --> 01:01:45.272
A lot of my medication needs to be compounded because I'm allergic.

01:01:46.372 --> 01:01:51.552
Insurance does not cover compound medication easily. I spent hours,

01:01:51.712 --> 01:01:57.432
probably a total of 40 hours over a month, just trying to get one medication covered.

01:01:57.552 --> 01:02:00.592
So there's a cost, there's a financial cost and a time cost.

01:02:01.927 --> 01:02:08.827
Thank you. Ms. Beal. Yes. For me, the same thing with the cost.

01:02:09.467 --> 01:02:15.267
So I have, you know, my co-pays that I pay for every specialist I see, and that really adds up.

01:02:15.487 --> 01:02:21.747
Also, I live in a small town about an hour away from most of my doctors,

01:02:21.807 --> 01:02:24.847
so I'm having to drive everywhere to these appointments.

01:02:24.847 --> 01:02:30.467
Appointments when my time would be better spent resting instead of going everywhere

01:02:30.467 --> 01:02:32.967
to try to see the doctors. It's very frustrating for me.

01:02:34.707 --> 01:02:40.307
You know, with my medical insurance, I have to see my PCP to ask for a referral.

01:02:40.427 --> 01:02:44.447
So when I wanted to see a neurologist, I had to ask to go see a neurologist

01:02:44.447 --> 01:02:48.307
or cardiologist, hematology, every time I had to have a referral.

01:02:48.487 --> 01:02:51.847
And then you have have to wait six months to get seen by the specialist and

01:02:51.847 --> 01:02:56.707
all this time is going by and you know what the issue is but you can't get in

01:02:56.707 --> 01:03:03.087
front of the right doctor so that's always that's been very frustrating um insurance

01:03:03.087 --> 01:03:07.207
when when things aren't covered that you need it's very,

01:03:08.047 --> 01:03:13.707
demoralizing because you know you need it and it's out of your um you know not

01:03:13.707 --> 01:03:16.067
in your own personal budget to cover it.

01:03:16.407 --> 01:03:21.587
One of the things that I need is massage therapy for my chronic pain.

01:03:21.827 --> 01:03:27.927
And I pay out of pocket, but I can't afford to go every week like I need to. I go maybe once a month.

01:03:28.047 --> 01:03:32.087
And that's something that helps people with long COVID.

01:03:32.267 --> 01:03:35.247
So why can't the insurance cover it?

01:03:36.567 --> 01:03:38.587
Good question. Really frustrating. Ms. Haim.

01:03:40.304 --> 01:03:42.884
My experience is very different because my daughter's on Medicaid.

01:03:43.144 --> 01:03:48.504
So what was going on with us was, well, first off, in order to get into Children's

01:03:48.504 --> 01:03:51.424
National, there was a lot of prior authorizations that needed to happen.

01:03:52.044 --> 01:03:56.404
I definitely feel for my doctor's office sometimes because of the hours that

01:03:56.404 --> 01:03:59.744
they put into getting us into some of these specialists.

01:04:01.544 --> 01:04:06.184
But part of the reason why we moved states was because we previously lived in

01:04:06.184 --> 01:04:09.224
West Virginia. And whenever I needed to see a specialist, which was a lot,

01:04:09.384 --> 01:04:13.664
we had to drive over three hours to go to the university to see a specialist.

01:04:13.804 --> 01:04:14.964
So it was like a full-time job

01:04:14.964 --> 01:04:19.024
getting her to all the appointments and the testing and all that stuff.

01:04:20.404 --> 01:04:23.504
So that was very hard. Well, I think you're all saying the same thing.

01:04:23.644 --> 01:04:28.864
We've got a kind of broken system that lacks transparency, competition, and all of that.

01:04:29.764 --> 01:04:35.564
Again, this healthcare price transparency 2.0 addresses all of that.

01:04:35.564 --> 01:04:39.884
And until we get that, we're always going to be wrestling with issues like you've

01:04:39.884 --> 01:04:41.304
just described. Thank you.

01:04:42.964 --> 01:04:48.124
Thank you, Senator Braun. Let me take Chairman's privilege to pick up on a point

01:04:48.124 --> 01:04:51.324
that Senator Braun made. He and I agree with the diagnosis.

01:04:52.364 --> 01:04:56.424
We have a health care system which is broken, which is dysfunctional.

01:04:56.444 --> 01:05:00.884
In my view, its main function is to make huge profits for the insurance companies

01:05:00.884 --> 01:05:02.524
and the drug companies. companies.

01:05:04.944 --> 01:05:09.344
Meanwhile, our life expectancy is far lower than many other countries.

01:05:09.824 --> 01:05:13.344
We don't have enough doctors, nurses, mental health practitioners,

01:05:13.744 --> 01:05:15.704
pharmacists, you name it.

01:05:17.804 --> 01:05:21.644
We need a fundamental overhaul of our healthcare system.

01:05:21.944 --> 01:05:25.424
Whether Congress is able to do it, given the power of the insurance companies

01:05:25.424 --> 01:05:30.224
and the drug companies and big money interest, we will see. Senator Hassan.

01:05:31.446 --> 01:05:34.966
Thank you, Mr. Chairman, and thank you, Ranking Member Cassidy, for this hearing.

01:05:35.186 --> 01:05:38.466
To the witnesses, thank you for being here today because this is really,

01:05:38.526 --> 01:05:41.566
really important for us to hear and understand.

01:05:41.986 --> 01:05:46.846
And before I turn to my questions, I just want to highlight the long COVID research

01:05:46.846 --> 01:05:51.546
that's happening in New Hampshire and the need for consistent investments in this work.

01:05:51.626 --> 01:05:54.146
So this is more for my colleagues than for the three witnesses.

01:05:54.706 --> 01:05:58.586
Patients in New Hampshire have benefited from the research and care happening

01:05:58.586 --> 01:06:02.366
at the Dartmouth Post-Acute COVID Syndrome Clinic.

01:06:02.566 --> 01:06:07.506
The clinic has received some federal funding through NIH, but additional funding

01:06:07.506 --> 01:06:12.406
to expand services for patients has been delayed because of uncertainty around

01:06:12.406 --> 01:06:15.366
consistent long-term federal funding.

01:06:15.586 --> 01:06:19.766
We have to work in a bipartisan manner to come to an agreement on long-term

01:06:19.766 --> 01:06:24.626
government funding, including to ensure reliable research funding that supports

01:06:24.626 --> 01:06:28.226
millions of Americans who are experiencing long COVID.

01:06:28.606 --> 01:06:32.566
So now to my questions to the panel. Ms. Beal, I want to start with you.

01:06:32.646 --> 01:06:37.586
And this is a follow-up on questions you've heard and discussions you've had

01:06:37.586 --> 01:06:39.526
with Senator Murray and just now Senator Braun.

01:06:39.826 --> 01:06:46.406
In New Hampshire, our clinic at Dartmouth Health is the only long COVID clinic in the state.

01:06:46.606 --> 01:06:50.266
The clinic is in the Upper Valley region of New Hampshire. And as a result,

01:06:50.306 --> 01:06:53.226
some patients may have to drive hours to get there.

01:06:53.806 --> 01:06:59.126
You've talked about the impact of long car rides on your condition,

01:06:59.306 --> 01:07:03.506
but it can be really hard for any patient, especially those experiencing symptoms

01:07:03.506 --> 01:07:06.826
of long COVID, to have to engage in that kind of travel.

01:07:07.046 --> 01:07:10.826
That's just one example of the barriers that patients face to accessing the

01:07:10.826 --> 01:07:14.826
care they need, but I just would like you to elaborate what has it been like

01:07:14.826 --> 01:07:21.006
for you with the symptoms you have to have to make long trips for your care?

01:07:23.166 --> 01:07:24.806
Thank you for your question, Senator.

01:07:26.270 --> 01:07:31.870
There have been many times where I've wanted to cancel appointments because I'm sick.

01:07:32.030 --> 01:07:35.690
I don't feel good or, you know, I have zero energy.

01:07:35.950 --> 01:07:40.790
And my husband's at work. He can't take off work to drive me everywhere.

01:07:41.050 --> 01:07:42.610
You know, he's our only income.

01:07:43.370 --> 01:07:49.350
So, yeah, there's plenty of times that I'm driving to my appointments and I'm just I'm so sick.

01:07:49.490 --> 01:07:52.030
And then I get into the appointment and I'm in front of the doctor.

01:07:52.030 --> 01:07:56.790
And I don't always remember every single thing that I need to say.

01:07:57.070 --> 01:08:01.850
I forget the biggest symptom that I need to talk about or I forget my questions.

01:08:02.210 --> 01:08:06.190
And all I'm thinking about is, gosh, I don't feel good. I just wanna go back

01:08:06.190 --> 01:08:09.050
home. And it's hard, it's really hard.

01:08:09.230 --> 01:08:13.670
Yeah, and I think it speaks to not only the challenges of long COVID patients,

01:08:13.810 --> 01:08:18.050
but just generally whenever patients with chronic illness have to travel a long time.

01:08:18.150 --> 01:08:24.010
So that's why rural healthcare care and having multiple places that can address

01:08:24.010 --> 01:08:26.050
various health care issues is so important.

01:08:26.690 --> 01:08:31.390
Ms. Vasquez, my office has heard from grant estaters with long COVID who are

01:08:31.390 --> 01:08:34.890
facing difficulties accessing and affording the health care that they need,

01:08:34.930 --> 01:08:35.970
just as you have discussed.

01:08:36.290 --> 01:08:40.790
One study suggests that patients who experience conditions like long COVID and

01:08:40.790 --> 01:08:45.790
chronic fatigue syndrome could face an average of $9,000 annually in medical bills.

01:08:46.110 --> 01:08:53.570
So, you talked about your experience in the out-of-pocket payments you've needed to make.

01:08:53.730 --> 01:08:59.010
But from a policy perspective, what can we do to protect patients from these costs?

01:08:59.170 --> 01:09:01.810
What are the recommendations? I know you've been advocating on this front.

01:09:03.130 --> 01:09:09.570
Yes, I think there absolutely needs to be government funding for research,

01:09:09.710 --> 01:09:13.030
which takes place in clinics and in long COVID clinics.

01:09:13.030 --> 01:09:19.190
And additionally, we have to hold health plans and especially managed care plans

01:09:19.190 --> 01:09:25.710
accountable for adequately reimbursing for services like care coordination.

01:09:25.830 --> 01:09:31.470
If you're working with 10 different specialists, you're going to need a care coordinator.

01:09:31.530 --> 01:09:36.950
And these are services that, again, that health plans are required by law to

01:09:36.950 --> 01:09:41.130
provide, and they're not always doing that. So some of our oversight function

01:09:41.130 --> 01:09:43.290
could also come into play here as well.

01:09:43.570 --> 01:09:49.870
Finally, to Ms. Heim, the small team at New Hampshire's Long COVID clinics serves

01:09:49.870 --> 01:09:54.130
around 60 new patients per month and hundreds of existing patients,

01:09:54.290 --> 01:09:57.130
and the rate of referrals to the clinic isn't slowing.

01:09:57.330 --> 01:10:00.570
About 6% of New Hampshire has Long COVID.

01:10:00.770 --> 01:10:04.890
It's clear that patients need access to more medical providers who can recognize

01:10:04.890 --> 01:10:09.710
and treat Long COVID. What would you like to see change in how providers understand

01:10:09.710 --> 01:10:11.990
and treat children with symptoms of long COVID?

01:10:12.090 --> 01:10:15.290
I know that's your particular area of expertise at this point.

01:10:17.097 --> 01:10:20.917
I would say just as we do a screening for depression with teenagers,

01:10:21.197 --> 01:10:24.777
let's say, why can't we do a write-up that screens for long COVID?

01:10:24.977 --> 01:10:30.117
Yeah. And we can not only have it at the doctor's office, but put it online so people can access it.

01:10:30.357 --> 01:10:34.337
And then if they, you know, realize that this might be what's affecting them,

01:10:34.437 --> 01:10:38.277
they can get in contact with a specialist, even have it accessible to the schools.

01:10:38.557 --> 01:10:41.797
Yeah. So if they have a child that's coming into the school counselor's office

01:10:41.797 --> 01:10:45.417
or missing a lot of school, it might raise a red flag and they can just put

01:10:45.417 --> 01:10:48.357
a document in front of them. And that could start the process.

01:10:48.917 --> 01:10:52.537
And then, of course, telling the doctors what's going on. Just giving them information

01:10:52.537 --> 01:10:56.517
we already have. I mean, I know so much just after the past couple years.

01:10:57.097 --> 01:11:00.937
And I tell every doctor I see, but that's not going to make much of an impact.

01:11:01.157 --> 01:11:04.577
So why not get it out there to everybody, what we know already?

01:11:04.897 --> 01:11:09.397
Right. Well, I appreciate that. And it strikes me that interacting with school

01:11:09.397 --> 01:11:13.517
nurses and getting school nurses engaged in this This is one way to make sure

01:11:13.517 --> 01:11:17.837
that the schools have that information from the viewpoint of a health care professional.

01:11:18.057 --> 01:11:21.617
So I appreciate that. Thank you very much, Mr. Chair. Senator Cassidy?

01:11:22.057 --> 01:11:27.237
Yeah, I'm a doctor. You're going to see my questions kind of reflect the technical aspect of this.

01:11:27.457 --> 01:11:30.637
By the way, you're talking about having to leave West Virginia,

01:11:30.837 --> 01:11:32.577
a beautiful state, to move to be closer.

01:11:32.757 --> 01:11:35.597
You're talking about Ms. Beal, et cetera, same sort of story.

01:11:35.597 --> 01:11:38.377
Is telemedicine, are people using telemedicine for this?

01:11:38.457 --> 01:11:42.197
Because I'm thinking that probably the examination is not showing very much.

01:11:42.197 --> 01:11:43.897
It's an interview and they're asking your response.

01:11:44.297 --> 01:11:49.697
So is Virginia Medicaid covering telemedicine or your insurance plans covering telemedicine?

01:11:51.897 --> 01:11:57.497
You know, I can say that, yes, my health plan is covering telemedicine.

01:11:57.557 --> 01:12:03.497
However, many of the specialists that I and others have seen are out of network

01:12:03.497 --> 01:12:08.917
and sometimes sometimes even out of state, which are not necessarily always covered.

01:12:09.197 --> 01:12:12.077
Many of the folks who have treated— Now, are the doctors themselves,

01:12:12.417 --> 01:12:17.397
herself, himself, requiring you to show up in person, or will they do a telemedicine

01:12:17.397 --> 01:12:20.757
interview as at least an intake interview? It depends.

01:12:21.397 --> 01:12:27.097
And I think for those of us who can get in that first appointment via telemedicine,

01:12:27.117 --> 01:12:29.897
it's great. But so many are in boutique practices.

01:12:30.497 --> 01:12:32.457
Ms. Beal, your experience?

01:12:35.737 --> 01:12:42.177
For me, telemedicine, telehealth is available with my health insurance. However,

01:12:43.600 --> 01:12:48.200
When I'm seeing a specialist, I want to see them. I need to be in the room with

01:12:48.200 --> 01:12:51.500
them. I want them to see me, all of me.

01:12:51.620 --> 01:12:54.840
Oh, I get that. Believe me, there's a therapeutic aspect to that interview,

01:12:54.960 --> 01:12:56.860
which as a physician, I'm so aware of.

01:12:57.100 --> 01:13:00.740
Sometimes for follow-up, it helps, though, particularly since you had mentioned

01:13:00.740 --> 01:13:02.080
the drive is so fatiguing.

01:13:03.360 --> 01:13:06.760
Ms. Heim, your experience? When

01:13:06.760 --> 01:13:10.860
we lived in West Virginia, WVU had a telemedicine office for children.

01:13:11.540 --> 01:13:14.820
So what would happen was we'd go see the specialist in Morgantown,

01:13:14.880 --> 01:13:19.780
and then for prior visits after that, we would go into an office and see a nurse

01:13:19.780 --> 01:13:23.280
or a PA, and they would essentially wheel the doctor in on a screen,

01:13:23.340 --> 01:13:24.520
and we would still get that visit.

01:13:25.300 --> 01:13:29.520
That was powerful. However, as a child, they required us to be at the hospital

01:13:29.520 --> 01:13:31.640
to do colonoscopy and pulmonary.

01:13:31.780 --> 01:13:34.760
All the testing always had to be done at the hospital.

01:13:34.880 --> 01:13:39.580
So even with that help of the telemedicine, we still had to travel quite a bit.

01:13:39.580 --> 01:13:44.840
But children's, of course, they have not done the telemedicine because a lot

01:13:44.840 --> 01:13:46.880
of times the doctors aren't licensed in different states.

01:13:47.120 --> 01:13:50.140
So you have to be in the state in order to see the doctor.

01:13:50.440 --> 01:13:55.380
So sometimes we'll drive and just kind of park and then see the doctor on the side of the road.

01:13:55.460 --> 01:13:58.520
But that's not very convenient. Now, you've been involved in children's.

01:13:58.520 --> 01:14:04.480
And as you all were talking, I was on PubMed looking at some of the articles and stuff.

01:14:04.680 --> 01:14:08.960
And the therapies, are they actually giving your child therapy at children's?

01:14:08.960 --> 01:14:13.940
Put it this way, is she in clinical trials testing different therapies as to

01:14:13.940 --> 01:14:16.260
what might be benefiting her?

01:14:16.400 --> 01:14:18.620
So there's two separate things. There's the long-quivet clinic,

01:14:18.700 --> 01:14:22.560
which has the doctors and the specialists, and then there's the NIH study that's

01:14:22.560 --> 01:14:25.160
run through children. So the study is just gathering information.

01:14:25.700 --> 01:14:30.600
It is observational. Two of my children are in that study because as a parent,

01:14:30.640 --> 01:14:33.840
that was the only thing we could do to help the situation is to give them information.

01:14:34.300 --> 01:14:37.860
So we just do the study to help. We get information sometimes,

01:14:37.980 --> 01:14:42.580
but mostly it's It's just them, you know, doing testing and questionnaires and stuff.

01:14:42.780 --> 01:14:49.160
The actual clinic has offered advice and treatments, and some of them have helped, yes.

01:14:49.500 --> 01:14:53.040
Okay. Now, the treatment, some of them are like massage. You had mentioned how

01:14:53.040 --> 01:14:54.420
massage therapy, et cetera.

01:14:54.600 --> 01:14:58.400
Are any of them clinical trials? We're going to try this drug versus placebo

01:14:58.400 --> 01:15:00.320
to see if this drug is beneficial.

01:15:00.620 --> 01:15:03.900
So I don't know if it's trials necessarily, but again, they've learned that

01:15:03.900 --> 01:15:05.780
there's COVID in the stool, right? Right.

01:15:05.800 --> 01:15:09.560
So one of my daughter's symptoms was she was nausea and vomiting and constipation

01:15:09.560 --> 01:15:11.420
and pain every day for like six months.

01:15:11.460 --> 01:15:14.020
She walked around with a puke bag in her hand all the time.

01:15:14.260 --> 01:15:18.600
And when we found out that it might be in the stool, we did a clean out through

01:15:18.600 --> 01:15:21.360
a colonoscopy. That was kind of by chance, but nevertheless.

01:15:21.520 --> 01:15:23.560
And then we started on a pro and prebiotic.

01:15:24.425 --> 01:15:28.805
That children's recommended, and those symptoms almost completely went away. Really?

01:15:29.045 --> 01:15:31.745
Yes. That's great. And that was not part of a clinical trial.

01:15:31.845 --> 01:15:33.165
No, but that's what I'm saying.

01:15:33.225 --> 01:15:36.665
I want the doctors to know what we're learning because somebody could be having

01:15:36.665 --> 01:15:40.985
nausea and vomiting and pain, and all they got to do is clean out their gut

01:15:40.985 --> 01:15:42.705
because COVID's still there a year later.

01:15:43.065 --> 01:15:46.825
Well, the probiotics helped. I mean, obviously, it's more than cleaning out

01:15:46.825 --> 01:15:48.145
the gut. But anyway, that said, Ms.

01:15:48.805 --> 01:15:54.045
Vasquez, post-exertional issues are major.

01:15:54.425 --> 01:15:57.545
I think everybody's describing you get tired, and you are the runner,

01:15:57.605 --> 01:15:58.745
so you're going to notice it most.

01:15:59.585 --> 01:16:03.425
So has there been, and I've read that there are some problems with the mitochondrial,

01:16:03.505 --> 01:16:04.745
so this may not be reparable.

01:16:05.005 --> 01:16:09.065
But in other cases, they're talking about how gradual physical therapy,

01:16:09.165 --> 01:16:11.145
et cetera, can actually be a positive thing.

01:16:11.505 --> 01:16:17.025
What therapies have been attempted for you as a former runner to attempt to

01:16:17.025 --> 01:16:19.085
recover your ability to exert?

01:16:19.985 --> 01:16:26.105
Dessert? As a former runner, I know what it's like to push through and overtrain

01:16:26.105 --> 01:16:28.105
to the point of stress fractures.

01:16:28.225 --> 01:16:33.465
And exercise is not good for me, especially when I... But there's things,

01:16:33.605 --> 01:16:37.485
there's passive resistance, for example, where the physical therapist kind of

01:16:37.485 --> 01:16:39.445
moves you back and forth, et cetera.

01:16:39.645 --> 01:16:43.825
And I'm not prescribing that. I'm just wondering, what's being tried?

01:16:43.825 --> 01:16:50.325
You know, I will say that there's just so much evidence that post-exertional

01:16:50.325 --> 01:16:54.105
malaise is the downstream effect of exercise.

01:16:54.305 --> 01:17:02.305
And I think exercise and movement will improve when we manage the upstream drivers

01:17:02.305 --> 01:17:06.885
of post-exertional malaise. Okay. Okay.

01:17:08.605 --> 01:17:10.185
Mr. Chairman, I hear you.

01:17:11.822 --> 01:17:16.002
You're welcome. Senator Cain. Thank you, Mr. Chair. And I really appreciate

01:17:16.002 --> 01:17:17.262
the witnesses being here.

01:17:17.422 --> 01:17:20.942
I think it's an honor to testify before the United States Senate.

01:17:21.422 --> 01:17:25.562
It can also be a hassle, but for y'all, it's an additional burden.

01:17:26.022 --> 01:17:30.222
It's a burden to come. And as Ms. Beal testified, or as Ms. Vasquez traveling

01:17:30.222 --> 01:17:32.302
across the United States, or Ms.

01:17:32.362 --> 01:17:37.502
Heim here with family, you're going to suffer a consequence from having been

01:17:37.502 --> 01:17:38.862
here today, likely fatigue.

01:17:39.242 --> 01:17:45.142
And so we don't have a lot of witnesses who have to come over the mountain the

01:17:45.142 --> 01:17:47.282
way you've had to, to be here. And I really appreciate it.

01:17:47.682 --> 01:17:51.302
And I've, you know, I've been dealing with my own lung COVID issue for almost

01:17:51.302 --> 01:17:53.362
four years. It's mild, thank goodness.

01:17:54.102 --> 01:17:58.142
I feel like every nerve ending in my body's in an Alka-Seltzer 24-7.

01:17:58.762 --> 01:18:03.122
And it is, I can work, I can focus, I can exercise. It's harder to sleep.

01:18:04.362 --> 01:18:07.282
After six months and then not going away, I finally decided,

01:18:07.342 --> 01:18:11.222
I guess, maybe it's not going I should see a neurologist, and I have been able

01:18:11.222 --> 01:18:16.242
to be told this is probably not going to get worse, and it's probably not going

01:18:16.242 --> 01:18:17.782
to get better, and both have proven true.

01:18:18.462 --> 01:18:21.402
Two other colleagues, one a former colleague, Senator Inhofe,

01:18:21.502 --> 01:18:24.942
and a current colleague, Senator Young, we wrote a piece about our own experiences

01:18:24.942 --> 01:18:28.342
together that I'd like to introduce into the record, if I might, Mr. Chair.

01:18:28.862 --> 01:18:31.982
And the reason that we wrote it is, Ms. Vasquez, you pointed out,

01:18:32.102 --> 01:18:34.022
and I think subsequent testimony is underlined.

01:18:34.940 --> 01:18:36.880
Long COVID is disproportionately affecting

01:18:36.880 --> 01:18:40.280
people of color. Long COVID is disproportionately affecting women.

01:18:41.080 --> 01:18:46.580
But, you know, we're three white guys. One got long COVID in his 40s, Senator Young.

01:18:46.720 --> 01:18:51.560
One got long COVID in his 60s, Senator Kaine. One got long COVID in his 80s, Senator Inhofe.

01:18:52.080 --> 01:18:55.680
And we decided after kind of finding ourselves on the floor of the Senate,

01:18:55.740 --> 01:18:58.480
bumming around and wonder if anyone else is having this weird experience.

01:18:58.580 --> 01:19:02.240
We are, we found each other and shared our experiences.

01:19:02.540 --> 01:19:06.880
And I think that the reason that we all started to be public about it is we

01:19:06.880 --> 01:19:08.260
didn't like that. You weren't being believed.

01:19:09.400 --> 01:19:13.800
Believed. U.S. senators get believed, you know, if I, if I, well,

01:19:14.000 --> 01:19:17.580
by a certain percentage of the population.

01:19:18.820 --> 01:19:21.660
I didn't have trouble getting believed by a, by a doctor.

01:19:21.840 --> 01:19:25.260
I didn't have trouble getting believed by a doctor. And I don't think Senator Inhofe did.

01:19:25.380 --> 01:19:29.820
I don't think Senator Young did. Our, our, our physical reports of our own conditions

01:19:29.820 --> 01:19:31.420
were given credibility.

01:19:31.520 --> 01:19:34.900
But so often with women, that's not the case.

01:19:34.920 --> 01:19:37.980
With minorities, that's not the case. With young people, it's not the case.

01:19:37.980 --> 01:19:42.300
We've seen the similar phenomenon in maternal mortality when we've had hearings about this.

01:19:42.460 --> 01:19:47.940
And so we decided, the three of us, to talk about our experiences so that people

01:19:47.940 --> 01:19:51.600
would understand they're being believed. And, Mr.

01:19:51.860 --> 01:19:56.480
Chair, by doing this hearing today, we can approach some substantive improvements.

01:19:56.700 --> 01:19:59.800
But also, I think doing a hearing like this has a way of sending a message that

01:19:59.800 --> 01:20:01.920
people are believed. believed.

01:20:02.340 --> 01:20:08.820
Ms. Beal, I don't want you to say more than you comfortably feel like you can,

01:20:09.500 --> 01:20:13.340
but can you talk a little bit about this SSDI ordeal and that you've been,

01:20:13.500 --> 01:20:17.160
I mean, the ADA says long COVID is a condition,

01:20:17.440 --> 01:20:22.280
a disabling condition that can be one that would either require reasonable accommodations

01:20:22.280 --> 01:20:25.860
or lead to an SSDI disability determination.

01:20:26.000 --> 01:20:31.340
But But in a situation where you're already low energy, you're going through

01:20:31.340 --> 01:20:33.800
an extended process where you've already been denied twice.

01:20:34.180 --> 01:20:37.520
Talk a little bit about how frustrating that might be. And you are a human resources

01:20:37.520 --> 01:20:39.580
professional who've helped employees do this.

01:20:39.680 --> 01:20:43.820
So imagine if you hadn't had that background, how frustrating this would be.

01:20:44.520 --> 01:20:46.260
Thank you for your question, Senator.

01:20:47.460 --> 01:20:53.060
It has been an ordeal, like you said. The whole process has been very frustrating. frustrating.

01:20:53.120 --> 01:20:55.680
The system is very difficult to navigate.

01:20:56.760 --> 01:21:00.640
You know, when I'm working on the paperwork, it's very overwhelming.

01:21:01.120 --> 01:21:06.040
And I can only work on it, but for so long, I have to, you know,

01:21:06.080 --> 01:21:09.540
I set like a little timer for about 30 minutes, because if I go over that,

01:21:09.700 --> 01:21:11.440
you know, I start getting headaches.

01:21:12.140 --> 01:21:20.020
So, you know, I'm trying to compile all of my medical documentation to send in. and you know.

01:21:21.266 --> 01:21:26.986
Both times I was denied, SSDI doesn't give specific reasons why you were denied.

01:21:27.186 --> 01:21:34.606
So I don't know what it is that they need for me to show that I can't work.

01:21:34.906 --> 01:21:38.366
So you don't know whether it's we don't think you're disabled or you didn't

01:21:38.366 --> 01:21:43.326
fill out this piece of information right or you left something blank or you really don't know.

01:21:43.466 --> 01:21:47.446
Right. You know, I don't know if they were able to get in contact with all the

01:21:47.446 --> 01:21:51.786
doctors. I don't know unless the doctor tells me.

01:21:51.926 --> 01:21:55.906
Here's a class of folks with long COVID who really have problems with the SSDI.

01:21:56.186 --> 01:21:59.346
A lot of people got COVID before we had tests.

01:22:00.126 --> 01:22:03.826
Remember how hard it was to get tested early on? And people who are getting

01:22:03.826 --> 01:22:07.746
COVID at the front end, they weren't even getting tested for COVID because there weren't tests.

01:22:08.286 --> 01:22:12.126
And then later, okay, maybe they get a vaccine. And then later,

01:22:12.146 --> 01:22:15.026
a test will show that they have antibodies in their body. But that could be

01:22:15.026 --> 01:22:17.826
because of the vaccine or it could be because they've already had COVID.

01:22:18.066 --> 01:22:22.706
And the medical professionals who are trying to make a resolution about SSDI

01:22:22.706 --> 01:22:25.926
are like, well, you have antibodies, but that doesn't mean you had COVID.

01:22:26.246 --> 01:22:32.986
So there's a set of problems that make this within the SSDI framework really tough.

01:22:32.986 --> 01:22:36.926
Now, we've dealt with situations like that in other contexts where we've had

01:22:36.926 --> 01:22:41.686
presumptive determinations, you know, for availability of health care benefits

01:22:41.686 --> 01:22:44.466
when firefighters get certain diseases that are,

01:22:44.566 --> 01:22:48.106
you know, because of conditions that are likely to occur in their profession.

01:22:48.266 --> 01:22:51.306
We give them presumptions that can be rebutted if they're not true.

01:22:51.366 --> 01:22:55.446
But it is a difficult proof burden, especially on somebody who's really suffering

01:22:55.446 --> 01:22:58.266
continuous symptoms of the kind you describe.

01:22:58.346 --> 01:23:02.326
And I hope I'm at my time and over it. but I'm going to let my colleagues go,

01:23:02.386 --> 01:23:05.506
but I hope that might be something we could focus some attention on.

01:23:06.359 --> 01:23:37.959
Good point. Senator Murkowski. impacted you clearly physically.

01:23:38.799 --> 01:23:40.119
You've shared that.

01:23:41.379 --> 01:23:49.479
But we're living in a time and a place when everybody questions the reality

01:23:49.479 --> 01:23:51.219
of the facts on the grounds,

01:23:51.299 --> 01:23:57.119
whether it's politics or COVID or just so many different things.

01:23:57.319 --> 01:24:01.339
And that's hard. That's hard on the mental health as well.

01:24:01.519 --> 01:24:07.459
And so So I would ask each of you if you can speak to the challenges that you

01:24:07.459 --> 01:24:14.259
may have had with regards to access to mental health care, behavioral health.

01:24:14.599 --> 01:24:20.319
Because I have to assume that as you have been dealing with the physical effects

01:24:20.319 --> 01:24:26.579
of this, when you feel like you are being challenged by others, it's not real.

01:24:27.559 --> 01:24:34.639
You'll get over it. it, you are making it more than it really is,

01:24:34.999 --> 01:24:39.879
that that has to be very stressful.

01:24:39.939 --> 01:24:46.979
That has to lead to higher anxiety, and that can lead to real depression.

01:24:48.359 --> 01:24:53.579
So if I can ask the three of you to share any thoughts that you may have on

01:24:53.579 --> 01:24:56.339
mental health and behavioral health access.

01:24:56.899 --> 01:24:59.999
We'll begin with you, Ms. Vasquez. Yes, thank you.

01:25:00.819 --> 01:25:07.799
A large part of my out-of-pocket expenses have been for therapy, for mental health care.

01:25:09.139 --> 01:25:14.719
I was not, even in Los Angeles, was not able to find a mental health provider

01:25:14.719 --> 01:25:23.459
who was in-network who would see me regularly and who didn't require me to drive an hour in traffic.

01:25:23.459 --> 01:25:27.279
Um, it was, uh, so that's a big part of my expenses.

01:25:27.579 --> 01:25:32.319
I will say also, I have a history of PTSD and trauma before,

01:25:32.379 --> 01:25:35.699
um, uh, before getting sick.

01:25:35.839 --> 01:25:41.019
And honestly, I think having depression in my health record contributed to the

01:25:41.019 --> 01:25:42.859
medical gaslighting that I experienced.

01:25:42.859 --> 01:25:51.999
I got a lot of, well, you know, the mind has, you know, really important impacts on the body.

01:25:52.119 --> 01:25:58.759
Well, the body has a lot of impact on the mind. And my experience.

01:25:59.553 --> 01:26:04.653
I think there's a social-emotional piece to, you know, my depression and my mood symptoms.

01:26:04.733 --> 01:26:09.513
And quite honestly, this is a neuroimmune condition, and brain inflammation

01:26:09.513 --> 01:26:14.593
has been shown to be linked to many mental illnesses and mood disorders.

01:26:14.853 --> 01:26:22.173
And so I 100% believe that as I get better care for my long COVID and ME-CFS,

01:26:22.493 --> 01:26:27.473
my mood will improve because my brain won't be as inflamed. Ms. Beal.

01:26:28.333 --> 01:26:34.793
Thank you. For me, for the access part of your question, the challenge for me

01:26:34.793 --> 01:26:38.373
has been getting an appointment with a neurologist.

01:26:38.393 --> 01:26:47.453
So I had a neuropsychological evaluation done, and it took me nine months just

01:26:47.453 --> 01:26:48.893
to get that appointment.

01:26:50.373 --> 01:26:55.073
And in that appointment, you know, you go through the different mental health diagnoses.

01:26:55.073 --> 01:27:03.213
And having depression that I didn't have before I was sick and,

01:27:03.233 --> 01:27:07.813
you know, trying to figure out what caused the depression.

01:27:08.013 --> 01:27:12.673
Well, in my case, it's the long COVID, you know, it's had that effect on me.

01:27:12.753 --> 01:27:17.873
I have insomnia, anxiety, all of that started when I got, you know,

01:27:17.873 --> 01:27:19.173
COVID and then long COVID.

01:27:19.393 --> 01:27:22.553
So that's been challenging.

01:27:22.833 --> 01:27:27.733
Like what you said, dad, what the doctors are saying to you is the same for me.

01:27:27.833 --> 01:27:31.133
You need to walk more. You need to be in the sun.

01:27:31.293 --> 01:27:36.053
You need vitamin D, all of those things. That'll make you feel better mentally.

01:27:36.553 --> 01:27:42.233
And that might help, yes, but the long COVID is causing the anxiety and depression.

01:27:42.533 --> 01:27:46.933
So if I'm not treating the long COVID as it needs to be treated,

01:27:46.973 --> 01:27:49.433
then the depression and anxiety are going to to continue.

01:27:52.233 --> 01:27:57.353
Time, do you have anything to add? I think one of the things that has been hard

01:27:57.353 --> 01:28:00.593
for me with my daughter is that she kind of tells herself, well,

01:28:00.613 --> 01:28:02.733
I just need to work harder. I just need to study more.

01:28:02.813 --> 01:28:05.933
I just need to do this or this or that, and things are going to get better.

01:28:06.093 --> 01:28:09.613
And the fact is, that's not true. One of the doctors we work with works with

01:28:09.613 --> 01:28:13.673
athletes, and they are studying it. And the more we push, the worse it gets.

01:28:14.153 --> 01:28:17.273
And that's very counterintuitive. but with this

01:28:17.273 --> 01:28:19.953
thing we have to figure out a

01:28:19.953 --> 01:28:22.793
way to treat it without pushing because what happens

01:28:22.793 --> 01:28:25.953
is you push harder it gets worse then you feel worse and it's

01:28:25.953 --> 01:28:30.093
like this rapid cycle that just goes and and so they have to find a way when

01:28:30.093 --> 01:28:34.333
she was doing physical therapy they did go very slow on the recommendation of

01:28:34.333 --> 01:28:39.753
that pulmonologist that had the information um so again it's about them getting

01:28:39.753 --> 01:28:45.533
the information so we can treat it properly and not create this cycle of depression and anxiety and,

01:28:45.593 --> 01:28:48.633
you know, push and then get worse and, you know.

01:28:50.033 --> 01:28:52.333
Thank you. Thank you, Mr. Chairman. Okay. Thank you. Senator Smith.

01:28:55.151 --> 01:28:59.871
I think Senator, well, I don't think Senator Smith would ever defer to me in

01:28:59.871 --> 01:29:04.571
anything other than allowing me to speak first, because I have to go do a press

01:29:04.571 --> 01:29:05.691
conference and then get back here.

01:29:06.611 --> 01:29:14.211
But I want to echo the appreciation for all of you to show up today and show up every day.

01:29:15.391 --> 01:29:19.331
I have one of, as everyone I think here, probably in this room,

01:29:19.411 --> 01:29:26.191
knows somebody who's been going through this. I have an old friend who is an amazing person.

01:29:26.911 --> 01:29:32.051
She's the first female producer of Monday Night Football, which is a strange claim to fame.

01:29:33.531 --> 01:29:39.851
And for her to be debilitated, it's just – I can't get my mind around it.

01:29:40.271 --> 01:29:48.151
And I know that you're all going through that same psychological evolution with

01:29:48.151 --> 01:29:49.831
yourselves, but with your child.

01:29:49.831 --> 01:29:52.891
Um anyway thank you i've

01:29:52.891 --> 01:29:58.071
got a a couple questions here um miss vasquez you mentioned your testimony that

01:29:58.071 --> 01:30:04.571
the uh tribulations you went through uh attempting to obtain a diagnosis of

01:30:04.571 --> 01:30:12.251
long covid um the doctor's mistaking some misbelieving all of that those uh travails uh.

01:30:13.971 --> 01:30:19.851
Given the nature of long COVID and also in addition to the symptoms and the

01:30:19.851 --> 01:30:21.771
biomarkers from patient to patient,

01:30:23.291 --> 01:30:28.071
I think you have spoken, but all of you really referred to the importance of

01:30:28.071 --> 01:30:31.191
doing more research, of integrating these stories into research.

01:30:31.431 --> 01:30:34.911
And University of Colorado is one of the nine centers that actually got funding

01:30:34.911 --> 01:30:38.371
from the Department of Health and Human Services to do some of this research.

01:30:39.611 --> 01:30:41.931
And so, Ms. Vazquez, I was going to ask,

01:30:44.223 --> 01:30:47.023
What's your sense of what that research should be focusing on?

01:30:47.063 --> 01:30:47.983
What should be the priorities?

01:30:50.683 --> 01:30:56.203
Well, I think patients, again, via lived experience and diving into the existing

01:30:56.203 --> 01:31:02.743
research, really needs to build on the existing research. Long COVID is not a new thing.

01:31:03.143 --> 01:31:06.243
ME-CFS is not new. Dysautonomia is not new.

01:31:06.423 --> 01:31:13.323
Mass cell activation is not new. And those conditions have historically been

01:31:13.323 --> 01:31:19.683
very underfunded compared to the disability that they have contributed to over generations.

01:31:20.003 --> 01:31:26.043
And so for me, I think the prioritization is grounding the current long COVID

01:31:26.043 --> 01:31:31.583
research in the historical infection-associated disease research. Ms. Beal?

01:31:34.543 --> 01:31:43.223
I think the research is extremely important because long COVID is a new illness,

01:31:43.423 --> 01:31:50.103
and there's so much that needs to happen quickly so that there can be a protocol

01:31:50.103 --> 01:31:53.563
developed and better treatment for us.

01:31:54.423 --> 01:32:00.363
You know, I pray all the time for a cure, but I don't know if that will happen for us.

01:32:00.563 --> 01:32:05.863
But in the very least, you know, there are some medicines that do help some

01:32:05.863 --> 01:32:08.823
patients and there's some different therapies that help patients.

01:32:09.043 --> 01:32:14.563
But if I had a list of what's going to work, try this, then I would go down

01:32:14.563 --> 01:32:15.723
and try every single one.

01:32:15.843 --> 01:32:20.123
But I don't know what that list is. You know, some people try different things

01:32:20.123 --> 01:32:24.883
and I don't want to just try different things and make my problems worse,

01:32:25.143 --> 01:32:30.183
but I don't, you know, we need to know what we can do so that we can feel better.

01:32:30.983 --> 01:32:32.583
Right. Ms. Heim?

01:32:33.783 --> 01:32:37.583
As I was saying before, share the information we already have. Get it out there.

01:32:37.763 --> 01:32:41.963
I mean, we've, the stuff that we've tried is not expensive, but it's helped.

01:32:42.083 --> 01:32:45.903
Like CoQ10 for the brain fog, probiotics, prebiotics, you know,

01:32:45.943 --> 01:32:49.603
I mean, there's stuff that you can, everybody can try. They just don't know to try it.

01:32:49.963 --> 01:32:52.843
And like she was saying, it gives us hope to at least have

01:32:52.843 --> 01:32:55.583
an idea or something we can start somewhere we can

01:32:55.583 --> 01:32:58.563
start because if it works it works and we get our lives back

01:32:58.563 --> 01:33:01.903
or at least they get better right absolutely what's

01:33:01.903 --> 01:33:06.563
there is always an inclination in in science and certainly in health care to

01:33:06.563 --> 01:33:11.243
to not present things until you understand how you know all the facts and know

01:33:11.243 --> 01:33:16.803
what exactly you're you can recommend and not i think we are what we're seeing

01:33:16.803 --> 01:33:21.503
is the necessity of dealing with more uncertainty uh being able to navigate with that.

01:33:23.683 --> 01:33:27.563
Ms. Vax says, you also talked about the difficulty of going on and off healthcare.

01:33:28.243 --> 01:33:31.503
You all kind of alluded to the challenges of the red tape and the bureaucracy,

01:33:31.823 --> 01:33:39.023
but there is a strong demand from the public now to prevent fraud and make sure

01:33:39.023 --> 01:33:42.583
that we are being vigilant with every tax dollar that is spent.

01:33:43.944 --> 01:33:47.844
What things do you think that we could simplify? And maybe this is a longer

01:33:47.844 --> 01:33:50.024
question that you can answer later,

01:33:50.284 --> 01:33:58.944
but how can we make this paperwork simpler and yet make sure that we're still protecting,

01:33:59.284 --> 01:34:01.864
you know, being careful in terms of protecting against fraud?

01:34:03.664 --> 01:34:11.784
Yeah, I will. I will say that the threat and fear of fraud is probably much,

01:34:11.944 --> 01:34:17.124
much smaller in reality. Nobody wants to be sick.

01:34:17.584 --> 01:34:22.464
Nobody, nobody wants to be disabled in an ableist society.

01:34:22.464 --> 01:34:26.124
And so I would

01:34:26.124 --> 01:34:29.484
say things we could do is I think presumptive

01:34:29.484 --> 01:34:36.024
eligibility would be a huge start for benefits and both disability benefits

01:34:36.024 --> 01:34:43.124
as well as clinical services and community-based services because there's just

01:34:43.124 --> 01:34:47.384
such a broad population of folks who are living with this. Right, right.

01:34:47.504 --> 01:34:50.804
Well, thank you. I'm out of time, but I appreciate. Sorry.

01:34:51.784 --> 01:34:56.364
It's a little bit like Jeopardy where you see someone going to the buzzer. Thank you.

01:34:57.564 --> 01:35:01.504
Thank you, John. Senator Smith. with. Thank you, Chair Sanders and Ranking Member

01:35:01.504 --> 01:35:03.744
Cassidy. And thanks to all of you so much for being here.

01:35:04.164 --> 01:35:08.784
You know, health is a very personal thing. And so to be in this room with these

01:35:08.784 --> 01:35:12.944
bright lights and share such personal stories about your lives is really much appreciated.

01:35:13.084 --> 01:35:18.904
And I really appreciate Senator Murkowski's line of questioning around the kind

01:35:18.904 --> 01:35:22.544
of the interaction between mental health and physical health and how one fuels

01:35:22.544 --> 01:35:24.004
the other and how connected they are.

01:35:24.124 --> 01:35:26.344
So just thank Thank you for your answers to that.

01:35:26.904 --> 01:35:31.304
I'd like to just take my time to understand a little bit about how insurance,

01:35:31.544 --> 01:35:33.624
how it's working with your health insurance coverage.

01:35:33.804 --> 01:35:38.244
And, you know, so there are no FDA approved treatments for long COVID.

01:35:38.364 --> 01:35:43.244
And I'm wondering what your experience has been with your health insurance and

01:35:43.244 --> 01:35:47.164
their willingness to cover non-approved drugs. And I mean.

01:35:48.463 --> 01:35:51.463
I'll be honest, I think a lot of times it's hard for people to get health insurance

01:35:51.463 --> 01:35:54.943
coverage for stuff that we have a lot more experience with.

01:35:55.463 --> 01:36:00.003
And so could each of you just be willing to talk a little bit about what that experience has been?

01:36:00.063 --> 01:36:02.563
And I'm wondering if we might be able to learn something from that as we think

01:36:02.563 --> 01:36:04.683
about what we can do to make this work better.

01:36:06.423 --> 01:36:13.143
Yes. Thank you for that question. I feel like I will send you a longer story

01:36:13.143 --> 01:36:16.903
that I think really highlights this issue,

01:36:17.003 --> 01:36:25.643
but I will say generally on my charts and in billing for my long COVID care,

01:36:25.903 --> 01:36:32.663
I'm diagnosed with a lot of symptoms and I'm able to get, you know,

01:36:32.663 --> 01:36:36.523
prescriptions or treatments for those particular symptoms.

01:36:36.703 --> 01:36:42.323
That, again, required my specialist to know how to sort of like bill the care

01:36:42.323 --> 01:36:44.063
that they are providing me.

01:36:44.823 --> 01:36:50.823
And again, it requires a lot of staff time from their office as well to do prior

01:36:50.823 --> 01:36:52.583
authorizations, all of that.

01:36:53.143 --> 01:36:59.483
So I do think there's a lot that can be done to,

01:37:00.123 --> 01:37:05.343
validate from the insurance side treatments that are for long COVID and not

01:37:05.343 --> 01:37:10.863
require doctors to to sort of do the back-end maneuvering to get something covered

01:37:10.863 --> 01:37:13.043
when they know it's medically necessary.

01:37:13.543 --> 01:37:15.963
This is why I hear from providers all the time that they have to have,

01:37:15.963 --> 01:37:18.803
like, full-time staffs that are just trying to figure out how to get insurance

01:37:18.803 --> 01:37:22.203
companies to cover care. Absolutely, yes. Right, right. Ms. Beal?

01:37:25.006 --> 01:37:33.286
For me, I think it would be helpful if the insurance companies could recognize

01:37:33.286 --> 01:37:35.786
long COVID as its own illness,

01:37:35.926 --> 01:37:41.346
and then maybe some of those treatments and procedures would be covered more quickly.

01:37:41.866 --> 01:37:47.086
I've experienced delays with different things that I've needed waiting for for

01:37:47.086 --> 01:37:48.406
the insurance to approve it.

01:37:48.966 --> 01:37:55.126
One example is I need oxygen at night and my doctor ordered it in August,

01:37:55.166 --> 01:37:58.466
but I didn't get it until I think late October.

01:37:58.606 --> 01:38:04.226
And it was because of my insurance company and the company that was providing the oxygen.

01:38:05.246 --> 01:38:10.766
So I think, you know, having to wait for something that you need because of

01:38:10.766 --> 01:38:16.326
whatever conversation the insurance company is having with with the doctors,

01:38:16.446 --> 01:38:19.686
all the stuff that's happening behind the scenes that's taking way too long.

01:38:19.766 --> 01:38:21.006
Right. It needs to be streamlined.

01:38:21.326 --> 01:38:23.026
Well, and that's got to have a big impact. You're talking about,

01:38:23.126 --> 01:38:27.226
for example, suffering from insomnia, struggling to sleep.

01:38:27.346 --> 01:38:30.626
And there you have right there something that could happen that would be useful.

01:38:30.726 --> 01:38:33.206
Why do you have to wait? Right. Exactly. Ms.

01:38:33.706 --> 01:38:35.906
Heim, I'm really interested in your answer to this question.

01:38:36.026 --> 01:38:39.226
And I'm also wondering, as I understand it, your daughter was able to get connected

01:38:39.226 --> 01:38:44.346
into a long COVID study at Children's National.

01:38:44.346 --> 01:38:48.386
And I think often our problems in health care, like you could just sort of multiply

01:38:48.386 --> 01:38:50.706
them for people that are living in more rural communities.

01:38:51.046 --> 01:38:54.966
And so, you know, it's like just always worse, it seems.

01:38:55.646 --> 01:38:58.766
Could you just maybe talk a bit about your own experience with insurance and

01:38:58.766 --> 01:39:02.246
then how it has worked with your daughter, how her care has,

01:39:02.366 --> 01:39:08.386
I wonder, been improved because she's been able to be part of this larger hospital study?

01:39:09.346 --> 01:39:12.786
I would say yes, absolutely. Absolutely. I'm very fortunate that she got the

01:39:12.786 --> 01:39:15.546
diagnosis so quickly and got referred into this group.

01:39:15.786 --> 01:39:18.286
And the study is just separate. It's informational.

01:39:18.546 --> 01:39:23.326
It's its own entity. But the actual long COVID team that they have,

01:39:23.426 --> 01:39:27.326
my poor doctor's office, I mean, they had to not get authorization for the head

01:39:27.326 --> 01:39:30.166
of the team, but every single doctor on the team.

01:39:30.446 --> 01:39:34.486
So it was months of back and forth paperwork. And in the meantime,

01:39:34.726 --> 01:39:35.986
they were trying to do tests.

01:39:36.066 --> 01:39:39.306
They thought she She had narcolepsy at one point because her fatigue was so bad.

01:39:39.526 --> 01:39:44.766
And just to get the sleep apnea test, all the crap that they have to go through

01:39:44.766 --> 01:39:48.786
to just get the test approved is a nightmare for the doctor's offices.

01:39:49.046 --> 01:39:52.686
And again, as this is happening, I'm watching my child suffer.

01:39:52.906 --> 01:39:57.346
I'm watching her sit down in the middle of a grocery store and just say, I can't go anymore.

01:39:57.666 --> 01:40:01.526
And meanwhile, I'm waiting. I'm waiting. I'm waiting. I'm waiting to find the

01:40:01.526 --> 01:40:03.966
answers. So yes, that's very frustrating. Right.

01:40:05.379 --> 01:40:08.659
Chair Sanders, I often feel that our insurance companies are designed to figure

01:40:08.659 --> 01:40:10.959
out how to deny care rather than to provide care.

01:40:11.179 --> 01:40:14.459
And I think that these stories illustrate what that means for people that are

01:40:14.459 --> 01:40:17.479
living with long COVID. Senator Smith, you are exactly right.

01:40:17.619 --> 01:40:20.539
And that's why I intend to bring the major insurance companies here.

01:40:20.699 --> 01:40:26.679
These companies make tens of billions of dollars in profit every single year.

01:40:27.039 --> 01:40:30.679
And there are very few Americans who don't have to struggle to get the care that they deserve.

01:40:31.099 --> 01:40:33.259
So that's an issue we will deal with in this committee.

01:40:38.239 --> 01:40:42.519
Senator Markey, and I would, before Senator Markey goes, I would remind everybody

01:40:42.519 --> 01:40:47.179
that we have, this has been an extraordinary panel, but we have four experts

01:40:47.179 --> 01:40:48.739
who are going to at least tell us,

01:40:49.239 --> 01:40:54.299
what kind of progress we're making in understanding the disease and treating it. Senator Markey.

01:40:55.099 --> 01:40:57.459
Thank you, Mr. Chairman, very much. Thank you for this hearing.

01:40:57.559 --> 01:41:04.179
Thank you, Senator Kaine, for your continued leadership and partnership on this issue.

01:41:04.179 --> 01:41:08.159
Um covid is real and

01:41:08.159 --> 01:41:11.779
it is um disabling and um

01:41:11.779 --> 01:41:14.499
and we know that we have to work on it

01:41:14.499 --> 01:41:20.419
the the numbers are staggering actually from nih staggering that of people who

01:41:20.419 --> 01:41:29.419
have covid have had covid 22 to 38 of them are experiencing long covid can i

01:41:29.419 --> 01:41:33.499
say that number again of people who have had had COVID,

01:41:33.699 --> 01:41:37.719
it's 22% to 38% who have long COVID.

01:41:38.439 --> 01:41:42.139
And that may be an underestimation according to NIH.

01:41:42.919 --> 01:41:49.339
So even as we talk about 5% of adults have had it, think about the people who

01:41:49.339 --> 01:41:53.499
have had it and why people who haven't had it should be very careful.

01:41:54.279 --> 01:41:58.819
They should be masking. They should be getting vaccinated because there's a

01:41:58.819 --> 01:42:00.939
high probability they will have long COVID. it.

01:42:01.199 --> 01:42:05.759
That's what NIH is telling us. So all the warning signs are there.

01:42:05.819 --> 01:42:12.779
We thank all of you who are here for your leadership, for your willingness to be here.

01:42:13.199 --> 01:42:19.139
And I just hope people understand it.

01:42:19.179 --> 01:42:21.459
This is not going away. It's still there.

01:42:21.959 --> 01:42:28.579
And if you get it, there's a very high probability that you're going to have long COVID.

01:42:28.719 --> 01:42:34.959
So just something that I think has to be made clear over and over again.

01:42:35.079 --> 01:42:40.259
In 2018, I introduced a resolution raising awareness of chronic fatigue syndrome.

01:42:42.099 --> 01:42:46.519
Like long COVID, this illness can come up after fighting off a virus.

01:42:46.819 --> 01:42:52.239
Now we're seeing more and more people navigating both ME, CFS,

01:42:52.259 --> 01:42:54.619
and long COVID, and they are fighting for recognition.

01:42:55.945 --> 01:42:59.805
Of both conditions. People don't believe the patients.

01:43:00.645 --> 01:43:07.385
They think that there's some phony, you know, pretend disease that people have.

01:43:07.565 --> 01:43:12.165
Well, we know that's not the case. And that's what our witnesses are making very clear here today.

01:43:12.365 --> 01:43:17.965
And meanwhile, research into these and other infection-related chronic illnesses

01:43:17.965 --> 01:43:20.805
is sorely overdue and underfunded.

01:43:20.925 --> 01:43:24.965
And this has has left patients without answers and health care providers without

01:43:24.965 --> 01:43:26.545
the training to treat them.

01:43:26.645 --> 01:43:31.805
It is unacceptable to force people to fight their chronic illnesses and a health

01:43:31.805 --> 01:43:34.765
system that doesn't recognize their illness.

01:43:35.145 --> 01:43:40.025
We need to fund research to coordinate and fund research on conditions triggered

01:43:40.025 --> 01:43:46.885
by viral infections that will drive us towards diagnosis and treatments and cures.

01:43:46.885 --> 01:43:52.005
Us, researchers, medicines, fields of dreams from which we harvest the findings

01:43:52.005 --> 01:43:54.765
which we need to give help to those who are affected.

01:43:54.965 --> 01:44:00.345
So, Ms. Vasquez, in your testimony, you shared how your symptoms were dismissed

01:44:00.345 --> 01:44:05.525
in the early days of the pandemic and health providers didn't acknowledge the

01:44:05.525 --> 01:44:09.565
link between viral infections and chronic illnesses.

01:44:10.385 --> 01:44:15.825
Ms. Vasquez, what would coordinated efforts at the National Institutes of Health

01:44:15.825 --> 01:44:20.225
to better understand infection-associated chronic illnesses mean to you and

01:44:20.225 --> 01:44:22.805
to all of those who have had similar experiences?

01:44:24.345 --> 01:44:33.905
I think if the NIH really embraced the reality of infection-associated diseases,

01:44:34.205 --> 01:44:40.725
we could actually do some incredible science to drive the science forward.

01:44:40.925 --> 01:44:46.725
I mean, I mean, just historically, we didn't believe multiple sclerosis existed.

01:44:46.905 --> 01:44:51.105
And then we got better imaging and saw all the lesions.

01:44:51.645 --> 01:44:57.365
And now VA research has shown that Epstein-Barr virus, the virus that causes

01:44:57.365 --> 01:45:04.225
mono, is very associated to the point of potentially causing multiple sclerosis.

01:45:04.225 --> 01:45:11.545
So, if we really embrace sort of the history of infections triggering disease,

01:45:12.025 --> 01:45:16.965
we can do some really cool science around microclots or viral persistence.

01:45:17.845 --> 01:45:24.065
The science is happening on such a small scale, but the U.S.

01:45:24.085 --> 01:45:27.785
Could really be the leader for a cure for these kinds of conditions.

01:45:28.285 --> 01:45:30.445
Yep. So, we believe you.

01:45:31.165 --> 01:45:33.325
Thank you. We know you're not faking it.

01:45:34.345 --> 01:45:43.465
And we know that 22 to 38% of those people who have had COVID are not faking it.

01:45:44.105 --> 01:45:46.285
Otherwise, there wouldn't be so many of them.

01:45:47.178 --> 01:45:51.798
So it's absolutely imperative that we provide the funding for research.

01:45:52.038 --> 01:46:00.958
Yep. That we have our top scientists working on this issue,

01:46:01.058 --> 01:46:07.118
or else we're going to have people with this debilitating illness who have to

01:46:07.118 --> 01:46:11.898
be out there wondering why they're being stigmatized when there's an underfunding

01:46:11.898 --> 01:46:17.058
of the research needed in order to provide hope for those families.

01:46:17.178 --> 01:46:20.218
So thank you all so much for being here again today. Thank you. Okay.

01:46:21.738 --> 01:46:27.018
This ends our panel with patience. And I know I speak for every member of this

01:46:27.018 --> 01:46:28.918
committee in thanking you.

01:46:28.938 --> 01:46:31.858
It's not been easy for you literally physically to get here.

01:46:33.558 --> 01:46:41.018
And your testimony has been extremely powerful and helpful in allowing us to go forward.

01:46:41.078 --> 01:46:43.998
So we are very grateful to you being here. Thank you very much.

01:46:49.878 --> 01:46:55.338
And now we're going to hear from our next panel.

01:47:13.338 --> 01:47:25.918
Thank you.

01:47:59.818 --> 01:48:03.918
We just heard an extraordinary panel of patients,

01:48:03.998 --> 01:48:10.638
and now we're going to hear a panel of experts, doctors and experts who are

01:48:10.638 --> 01:48:15.698
studying the issue and trying to help us come up with some solutions to this crisis.

01:48:16.238 --> 01:48:23.378
We have four very well-qualified panelists, Dr. Michelle Harkins, Dr. Ziad Al-Ali, Dr.

01:48:23.538 --> 01:48:30.838
Sharice Madlock-Brown, and Dr. Tiffany Walker. We thank all of them very much for being with us.

01:48:31.438 --> 01:48:37.338
Our first witness is Dr. Harkins. He's a professor of medicine and division

01:48:37.338 --> 01:48:42.258
chief of pulmonary critical care and sleep medicine at the University of New Mexico.

01:48:43.218 --> 01:48:45.218
Dr. Hawkins, thanks very much for being with us.

01:48:46.800 --> 01:48:51.720
Thank you. Good morning. Thank you, Chairman Sanders, Ranking Manager Cassidy,

01:48:51.880 --> 01:48:53.540
and the distinguished members of this committee.

01:48:53.960 --> 01:48:58.040
My name is Michelle Harkins, and I am a pulmonary critical care physician from

01:48:58.040 --> 01:49:00.100
the University of New Mexico in Albuquerque.

01:49:00.340 --> 01:49:05.120
I'm honored to appear before you here today to talk about the impact long COVID

01:49:05.120 --> 01:49:09.300
is having on patients and to provide recommendations to this committee based

01:49:09.300 --> 01:49:14.260
on my work as a clinical researcher, a clinician, and an educator.

01:49:14.720 --> 01:49:19.840
I'm an an ICU doc in a busy urban medical center and was in the trenches with

01:49:19.840 --> 01:49:23.560
the critically ill COVID-19 patients that were dying since the beginning of the pandemic.

01:49:23.900 --> 01:49:26.060
I was our lead investigator for

01:49:26.060 --> 01:49:29.780
many COVID clinical trials, including the NIH-funded platform networks.

01:49:30.480 --> 01:49:34.960
As the initial phases of the pandemic changed and we began to learn more about

01:49:34.960 --> 01:49:39.700
long COVID and the effects that COVID-19 was having on patients,

01:49:39.920 --> 01:49:43.780
UNM joined the NIH Recover Initiative initiative to help understand this new

01:49:43.780 --> 01:49:47.920
disease, and we will participate in recover clinical trials.

01:49:48.120 --> 01:49:53.980
I want to share a story about a mid-career primary care doc in rural New Mexico.

01:49:54.240 --> 01:49:57.400
After serving her community and treating patients for years,

01:49:57.640 --> 01:50:01.740
she herself became infected with COVID-19, and then months later,

01:50:01.800 --> 01:50:05.560
she presented with signs of long COVID, including fatigue,

01:50:05.940 --> 01:50:09.760
brain fog, and difficulty breathing during even short periods of exercise.

01:50:10.400 --> 01:50:14.600
Two years later, these symptoms so impacted this patient that she eventually

01:50:14.600 --> 01:50:19.040
decided to leave her work, unable to maintain the mental recall needed to do

01:50:19.040 --> 01:50:21.880
her job in order to concentrate on her health.

01:50:22.520 --> 01:50:27.040
The NIH Recovery Research Initiative is poised to systematically study risk

01:50:27.040 --> 01:50:33.360
factors that lead to long COVID and ultimately lead to treatments that are individualized

01:50:33.360 --> 01:50:34.840
to certain patient subsets.

01:50:35.360 --> 01:50:39.240
Thank you for this committee and all the work that you have done to fund this

01:50:39.240 --> 01:50:43.140
important initiative, but the research and clinical needs are still ongoing.

01:50:43.620 --> 01:50:47.680
In addition to research and clinical care, I have a passion for sharing emerging

01:50:47.680 --> 01:50:52.180
new knowledge with my peers and learning from them about the challenges they

01:50:52.180 --> 01:50:54.180
face in their own communities of practice.

01:50:54.620 --> 01:50:57.940
When the pandemic began, I worked closely with Project ECHO.

01:50:58.640 --> 01:51:03.000
Leader of the ECHO model, an innovative method of creating virtual communities

01:51:03.000 --> 01:51:07.820
of practice to help accelerate peer-to-peer knowledge in a trusted community.

01:51:08.160 --> 01:51:12.000
We set up a virtual ECHO network to support the hundreds of healthcare providers

01:51:12.000 --> 01:51:16.340
across my state who are struggling to treat critically ill COVID-19 patients

01:51:16.340 --> 01:51:17.740
in their hospitals and clinics.

01:51:18.020 --> 01:51:21.920
And when the initial waves of the pandemic slowed, we then set up a parallel

01:51:21.920 --> 01:51:27.420
program for primary care providers to identify and help treat their long COVID

01:51:27.420 --> 01:51:31.560
patients, which was a HRSA-funded initiative. Through this program.

01:51:32.577 --> 01:51:35.977
Our team has helped train over 800 providers, mostly in New Mexico,

01:51:36.057 --> 01:51:42.097
but across the entire United States, on how to best identify patients and support them with long COVID.

01:51:42.777 --> 01:51:46.677
I believe the federal government and this committee in particular can help support

01:51:46.677 --> 01:51:48.417
patients with long COVID in several ways.

01:51:48.957 --> 01:51:51.797
Number one, need for continued investment in ongoing research.

01:51:52.157 --> 01:51:56.077
We need to continue the funding for the research of long COVID and understanding

01:51:56.077 --> 01:52:00.937
this very complex disease and its underlying mechanisms will translate into

01:52:00.937 --> 01:52:02.157
treatments for patients.

01:52:02.577 --> 01:52:06.597
Clinical trials should reflect the demographics of our population,

01:52:06.857 --> 01:52:12.697
so improving access for rural participants and those disproportionately affected by the disease is key.

01:52:13.337 --> 01:52:16.417
Number two, making access to clinical care easier for patients.

01:52:16.657 --> 01:52:21.017
We need multidisciplinary clinics with teams of subspecialists and healthcare

01:52:21.017 --> 01:52:26.617
providers together to address the myriad of symptoms, complexes that these patients face.

01:52:26.897 --> 01:52:30.557
To make this vision possible, we need to address reimbursement for providers

01:52:30.557 --> 01:52:36.197
in a a multidisciplinary long COVID clinic, who are seeing the same patient,

01:52:36.257 --> 01:52:39.337
multiple providers for the same illness on the same day.

01:52:39.537 --> 01:52:43.417
Asking CMS to provide guidance on the billing codes, reimbursements for long

01:52:43.417 --> 01:52:47.697
COVID, and how this code can best be used in multidisciplinary care is needed.

01:52:48.857 --> 01:52:52.237
Three, we have to prevent the recurrence or occurrence of long COVID.

01:52:53.197 --> 01:52:57.637
Vaccines do reduce the risk of long COVID, and so reducing new acquisition and

01:52:57.637 --> 01:53:01.017
administration costs to give of vaccines in rural clinics and other institutions

01:53:01.017 --> 01:53:02.657
would improve access to care,

01:53:02.797 --> 01:53:08.397
and supporting clinicians across the country to have access to the most up-to-date

01:53:08.397 --> 01:53:11.017
information in trusted communities of practice.

01:53:11.257 --> 01:53:15.917
So creating a national network of regional communities of practice that meets

01:53:15.917 --> 01:53:20.497
virtually and can then disseminate and share information involving new research

01:53:20.497 --> 01:53:23.477
findings and new treatment options to patients is key.

01:53:23.477 --> 01:53:29.517
This is tele-mentoring for providers, but in theory, this model could be used

01:53:29.517 --> 01:53:35.437
to create regional long COVID clinics where the experts actually see the patients directly.

01:53:36.457 --> 01:53:41.177
Expanded investment in the development of a national network of tele-mentoring

01:53:41.177 --> 01:53:43.457
would be a huge difference.

01:53:43.457 --> 01:53:48.017
Difference this national network of local providers and regional and national

01:53:48.017 --> 01:53:51.857
experts once created would then be available to help respond to the next pandemic

01:53:51.857 --> 01:53:54.157
or health emergency when it arises.

01:53:54.537 --> 01:53:58.457
Thank you again for the opportunity to testify, and I'm happy to answer your questions.

01:53:58.717 --> 01:54:02.577
Thank you, Dr. Harkins. Our next witness will be Dr. Ziad Al-Ali,

01:54:02.637 --> 01:54:06.837
Assistant Professor of Medicine at the Washington University School of Medicine.

01:54:07.117 --> 01:54:08.977
Dr. Al-Ali, thanks for being with us.

01:54:10.377 --> 01:54:14.817
Chairman Sanders and Ranking Member Dr. Cassidy and members of the Health Committee,

01:54:15.117 --> 01:54:17.477
thank you for the opportunity to testify today.

01:54:17.797 --> 01:54:21.497
I'm a physician scientist at Washington University in St. Louis.

01:54:22.017 --> 01:54:27.277
My team and I produced the first systematic characterization of long COVID and

01:54:27.277 --> 01:54:29.997
so far the most widely cited research on long COVID.

01:54:30.437 --> 01:54:34.897
We've been at the forefront of long COVID research since the early days of the

01:54:34.897 --> 01:54:40.177
pandemic when patients started telling us that they're not fully recovering from COVID-19.

01:54:40.857 --> 01:54:45.557
Now, long COVID represents the constellation of long-term health effects of COVID-19.

01:54:45.757 --> 01:54:51.797
It is a multi-system disorder that can affect nearly every organ system.

01:54:52.177 --> 01:54:55.317
It affects the brain. It affects the heart.

01:54:55.597 --> 01:54:59.157
It affects the endocrine system. It affects the immune system.

01:54:59.397 --> 01:55:00.937
It affects the GI system.

01:55:01.577 --> 01:55:07.117
Long COVID affects at least 20 million Americans. It affects people across the lifespan.

01:55:07.297 --> 01:55:11.717
We have kids with long COVID. We have people who are 100 years old with long COVID.

01:55:11.937 --> 01:55:15.677
It affects people across the lifespan and across demographic groups.

01:55:16.660 --> 01:55:21.640
The burden of long COVID, the burden of disease and disability from long COVID,

01:55:21.740 --> 01:55:26.640
when you measure it, is on par with the burden of cancer and heart disease.

01:55:27.320 --> 01:55:31.980
And even if people emerge unscathed after having the first infection,

01:55:32.340 --> 01:55:35.680
they can still get long COVID after reinfection.

01:55:35.780 --> 01:55:38.860
And I don't think enough people really know this fact or know about this.

01:55:39.740 --> 01:55:43.240
Recovery rates of long COVID are also low.

01:55:43.240 --> 01:55:48.920
Between low rates of recovery from long COVID and the cases that are due to

01:55:48.920 --> 01:55:53.640
reinfection, we're supposed to see continued rise in the burden of long COVID

01:55:53.640 --> 01:55:57.600
until we find better ways to prevent it and treat it.

01:55:58.140 --> 01:56:00.740
Now, you should be asking me now, how do we prevent long COVID?

01:56:01.120 --> 01:56:05.540
Well, the best way to prevent long COVID is to prevent COVID in the first place.

01:56:05.780 --> 01:56:07.840
There is actually no long COVID without COVID.

01:56:08.180 --> 01:56:13.880
You know, if you go back to 2019, you go back to 2018, None of us have heard of long COVID. Have you?

01:56:14.020 --> 01:56:17.740
You haven't. It didn't exist. There is no long COVID without COVID.

01:56:18.220 --> 01:56:23.120
We need a sustainable multi-pronged approach to prevent repeated infections

01:56:23.120 --> 01:56:25.160
that would be embraced by the public.

01:56:25.440 --> 01:56:30.860
This requires accelerating the development of oral and tranasal vaccines that

01:56:30.860 --> 01:56:33.540
block infections. This is very, very, very important.

01:56:34.500 --> 01:56:37.960
Ventilation and air filtration systems are also very important.

01:56:38.080 --> 01:56:43.060
They can play a major role in reducing the risk of transmission of airborne pathogens.

01:56:44.280 --> 01:56:49.960
We also need variant-proof vaccines. What the virus is doing is really continuing to mutate on us.

01:56:50.320 --> 01:56:52.200
You know, every few months, you're going to see a new variant.

01:56:52.320 --> 01:56:56.500
We need a variant-proof vaccine that lasts for a long time, that is durable,

01:56:56.660 --> 01:56:58.280
that offers durable immunity.

01:56:58.800 --> 01:57:01.720
People are sick and tired of having to have boosters every few months.

01:57:01.980 --> 01:57:06.240
We need vaccines that last for five years or so, so they can get it done and

01:57:06.240 --> 01:57:08.160
get it over with for five years.

01:57:08.900 --> 01:57:13.240
We must also understand vaccine side effects. This must be acknowledged and

01:57:13.240 --> 01:57:15.800
understood very, very deeply. This is very, very important.

01:57:17.264 --> 01:57:20.664
Now, you should be asking me also, like, how do we treat long COVID? You've heard it before.

01:57:20.864 --> 01:57:24.764
There are zero, zero approved medication for the treatment of long COVID.

01:57:24.864 --> 01:57:29.104
So these people have nothing to really lean on for curative treatment. Nothing. Zero.

01:57:29.424 --> 01:57:32.204
Zero FDA approved medications for the treatment of long COVID.

01:57:33.384 --> 01:57:37.804
This must change. We really need to change this. It's not beyond the might and

01:57:37.804 --> 01:57:40.544
the prowess of American medicine to solve this problem.

01:57:40.724 --> 01:57:44.244
It's absolutely not. We've solved much, much harder problems in the past.

01:57:44.324 --> 01:57:48.804
We just need to focus on this and solve it. We are the best nation on earth, and we can solve this.

01:57:48.884 --> 01:57:51.824
It's absolutely not beyond our prowess to address this.

01:57:52.804 --> 01:57:55.564
Now, people suffering from long COVID need treatment yesterday.

01:57:56.184 --> 01:58:00.284
You know, the ongoing and planned trials for long COVID are too slow and too

01:58:00.284 --> 01:58:02.024
small to offer definitive treatment.

01:58:02.824 --> 01:58:06.084
We've developed vaccines at rapid speed, at warp speed.

01:58:06.304 --> 01:58:09.504
You know what we're doing with long COVID? We're doing trials for long COVID

01:58:09.504 --> 01:58:11.484
at snail speed. This is what we're doing.

01:58:13.504 --> 01:58:20.304
We urgently need trials, large-scale trials, to test a broad array of repurposed

01:58:20.304 --> 01:58:23.184
drugs and development of new drugs to treat long-term patients.

01:58:23.544 --> 01:58:27.744
We must also identify that there is a barrier that is preventing the pharmaceutical

01:58:27.744 --> 01:58:31.344
industry from entering the game of long-term treatment and doing private long-term treatment.

01:58:32.204 --> 01:58:37.024
You could be asking me now, is COVID-19 effective to reduce long-term patients?

01:58:39.491 --> 01:58:45.051
The answer is yes. People reported debilitating fatigue, having to decline,

01:58:45.391 --> 01:58:49.491
and Parkinson's disease after the Spanish flu, how we disrupted under the rug.

01:58:50.431 --> 01:58:55.411
Other viruses, including polio and hipstone bar virus, can cause obstructive pain.

01:58:55.851 --> 01:59:00.991
EDT can cause obstructive pain. Chronic fatigue syndrome, or MTCFS,

01:59:01.171 --> 01:59:06.191
is also linked to a viral illness, a flu-like illness. It's a debilitating disease

01:59:06.191 --> 01:59:09.711
that affects 4.3 million people in the U.S.

01:59:10.271 --> 01:59:14.491
These patients have been marginalized and ignored for decades.

01:59:15.291 --> 01:59:18.771
So what do we learn from all of this? Well, we learn from all of this that acute

01:59:18.771 --> 01:59:22.011
infections, what I learned, the lesson number one from this whole pandemic,

01:59:22.271 --> 01:59:25.151
that acute infections can lead to chronic disease.

01:59:25.511 --> 01:59:28.751
That pandemics disable people. And this is not new.

01:59:28.891 --> 01:59:32.111
It happened after the Spanish flu. But we just ignored it. We just swept it

01:59:32.111 --> 01:59:37.411
under the rug. We call all of this broadly infection-associated chronic illnesses.

01:59:37.491 --> 01:59:43.731
This includes long COVID and includes ME-CFS and other basket of conditions

01:59:43.731 --> 01:59:46.351
that emanate from acute infections.

01:59:46.891 --> 01:59:52.131
And had we connected the dots between acute infections and chronic disease before

01:59:52.131 --> 01:59:57.871
the pandemic, we'd have a much, much better place to actually address the challenge of long COVID.

01:59:58.051 --> 02:00:01.811
We failed to connect those dots before the pandemic. Let's not do that same

02:00:01.811 --> 02:00:05.931
mistake again and be poised and ready to really, you know, address the challenge

02:00:05.931 --> 02:00:07.751
of long COVID and also the next pandemic.

02:00:08.631 --> 02:00:14.631
So where do we go from here? The research effort of long COVID must match the

02:00:14.631 --> 02:00:16.871
urgency and the scale of the problem.

02:00:17.771 --> 02:00:19.531
This is my opinion as a related must.

02:00:20.831 --> 02:00:24.711
And this is going to require a coordinated approach. In my opinion, the U.S.

02:00:24.731 --> 02:00:36.091
Should consider the establishment within NIA, COVID and ECFS that have been ignored for a long time,

02:00:36.251 --> 02:00:39.791
and other infection-associated chronic illnesses.

02:00:40.191 --> 02:00:44.971
You have an historic opportunity to act. The lives of millions of people here

02:00:44.971 --> 02:00:49.511
and around the globe, now and in the future, depend on this. Thank you.

02:00:50.311 --> 02:00:55.891
Thank you. Thank you. Our third witness is Dr.

02:00:56.051 --> 02:00:59.871
Sharice Madlock-Brown, Associate Professor of Health Informatics,

02:01:00.091 --> 02:01:02.271
the University of Iowa College of Nursing.

02:01:02.931 --> 02:01:05.631
Dr. Madlock-Brown, thanks very much for being with us.

02:01:06.771 --> 02:01:10.051
Chairman Sanders, Ranking Member Cassidy, and members of the committee,

02:01:10.171 --> 02:01:12.131
thank you for the opportunity to participate.

02:01:12.871 --> 02:01:17.751
Since 2021, I've been the co-lead for the National COVID Cohort Collaboratives,

02:01:17.791 --> 02:01:21.111
and that's N3C, their social determinant of health domain. main.

02:01:21.411 --> 02:01:35.471
At N3CN, there was a diverse team of epidemiologists that leads our data related to.

02:01:47.990 --> 02:01:52.350
This diversity is key to studying long COVID's impact across different groups.

02:01:52.530 --> 02:01:56.790
However, using data from these systems presents challenges like differences

02:01:56.790 --> 02:02:01.530
in utilization by subgroups and incomplete health records. These issues are

02:02:01.530 --> 02:02:05.050
partially addressed through privacy-preserving linkage between health systems

02:02:05.050 --> 02:02:07.030
and integrating billing data systems.

02:02:08.110 --> 02:02:13.330
These network efforts, such as N3C, are crucial in overcoming observational

02:02:13.330 --> 02:02:17.490
data limitations, such as the lack of standardization in these systems.

02:02:18.190 --> 02:02:21.910
Large networks have been instrumental in implementing harmonization pipelines

02:02:21.910 --> 02:02:25.910
and promoting data standardizations at a national level, thus enhancing the

02:02:25.910 --> 02:02:29.690
reliability and comparability of research findings on long COVID.

02:02:30.750 --> 02:02:34.730
Identifying patients with long COVID in electronic health record systems presents

02:02:34.730 --> 02:02:38.110
a challenge as the condition is severely underdiagnosed.

02:02:38.830 --> 02:02:44.670
Analysis of the long COVID code that came out in October of 2021 in the N3C

02:02:44.670 --> 02:02:48.570
system revealed demographic disparities in long COVID diagnosis,

02:02:48.990 --> 02:02:53.850
where patients who were female, white, non-Hispanic, and living in areas with

02:02:53.850 --> 02:02:58.130
low poverty and low unemployment were more likely to receive a diagnosis,

02:02:58.130 --> 02:03:02.270
which emphasized the need for greater accessibility to diagnosis and treatment.

02:03:03.110 --> 02:03:08.550
Researchers do have several options to identify patients with long COVID in these systems.

02:03:08.790 --> 02:03:14.670
For instance, at N3C, one team developed a machine learning model which showed

02:03:14.670 --> 02:03:17.750
high accuracy in classifying patients without a diagnosis.

02:03:18.350 --> 02:03:23.230
So the model was trained using data from patients who'd visit a long COVID clinic.

02:03:23.230 --> 02:03:29.050
At the same time, other observational studies focus on improving self-reporting

02:03:29.050 --> 02:03:31.570
of symptoms like brain fog and fatigue.

02:03:33.172 --> 02:03:37.532
Researchers using these electronic health record data warehouses have been pivotal

02:03:37.532 --> 02:03:43.212
in helping us understand both COVID-19 and long COVID, revealing key symptoms and risk factors.

02:03:43.992 --> 02:03:48.652
One review by Sudra has identified common symptoms, while others have really

02:03:48.652 --> 02:03:52.152
shown the variability in post-COVID conditions across different populations.

02:03:53.212 --> 02:03:57.592
To further characterize long COVID, one N3C team used computational modeling

02:03:57.592 --> 02:04:02.592
to classify patients into six distinct clusters with an emphasis on indicating

02:04:02.592 --> 02:04:04.412
cluster severity of condition.

02:04:04.852 --> 02:04:10.092
And another analyzed data from thousands of patients categorizing symptom co-occurrence

02:04:10.092 --> 02:04:14.692
into neurological, cardiopulmonary, gastrointestinal, and comorbid condition

02:04:14.692 --> 02:04:18.272
clusters, which can help us understand the trends in long COVID broadly.

02:04:19.612 --> 02:04:23.272
Infection-associated chronic illness is not new.

02:04:23.632 --> 02:04:27.852
There is a significant intersection in symptomology between long COVID and a

02:04:27.852 --> 02:04:32.552
spectrum of related chronic conditions, notably myalgic encephalomyelitis,

02:04:32.672 --> 02:04:34.752
chronic fatigue syndrome, or ME-CFS.

02:04:36.052 --> 02:04:41.052
Studies have shown that 50% of long COVID patients fit ME-CFS criteria.

02:04:41.652 --> 02:04:45.072
The emergence of long COVID has cast a spotlight on these conditions,

02:04:45.292 --> 02:04:48.652
underscoring the urgent need for more research into their shared characteristics

02:04:48.652 --> 02:04:56.132
and underlying mechanisms. There is a critical need for a moonshot initiative to tackle long COVID.

02:04:56.352 --> 02:05:04.712
The scarcity of clinical trials focusing on long COVID's underlying causes and

02:05:04.712 --> 02:05:06.612
treatments poses a barrier to progress.

02:05:06.912 --> 02:05:10.812
A call to actions by patients and researchers poses that the U.S.

02:05:10.832 --> 02:05:14.532
Government leads this initiative with a significant annual investment like the

02:05:14.532 --> 02:05:19.172
Cancer Moonshot Program to inspire global action against this widespread health challenge.

02:05:20.072 --> 02:05:23.792
Key priorities for the Moonshot Initiative should be conducting clinical trials

02:05:23.792 --> 02:05:26.652
for behavioral and experimental medicine treatments.

02:05:27.092 --> 02:05:30.892
In tandem with clinical trials, several activities can support observational

02:05:30.892 --> 02:05:35.872
research systems like N3C to enhance our understanding of long COVID and bolster trial findings.

02:05:36.212 --> 02:05:42.772
Activities can include symptoms and fetotypes across the swath of infection-associated

02:05:42.772 --> 02:05:46.232
chronic conditions, improving diagnosis and treatment accessibility,

02:05:46.692 --> 02:05:49.712
and establishing clinical guidelines for consistent diagnosis.

02:05:50.312 --> 02:05:53.992
Additionally, the Moonshot should emphasize coordinated clinical programs for

02:05:53.992 --> 02:05:54.952
underserved communities,

02:05:55.472 --> 02:05:59.152
structuring clinical data for better research, including incorporating social

02:05:59.152 --> 02:06:03.432
determinant of health data to better understand biases in health and disparities in outcomes,

02:06:03.712 --> 02:06:07.572
and linking these systems with clinical trials and data sets like claims and

02:06:07.572 --> 02:06:10.632
mortality for more comprehensive representation of patient health.

02:06:10.812 --> 02:06:14.332
These efforts aim to advance the understanding and treatment of long COVID,

02:06:14.432 --> 02:06:16.152
ultimately leading to better patient outcomes.

02:06:18.784 --> 02:06:22.124
Dr. Madlock, Dr. Madlock, I want to thank you very much.

02:06:22.264 --> 02:06:26.204
Our next witness will be Dr. Tiffany Walker, Assistant Professor,

02:06:26.564 --> 02:06:28.344
Emory University School of Medicine.

02:06:28.644 --> 02:06:31.484
Dr. Walker, thanks very much for being here. Thank you so much.

02:06:31.564 --> 02:06:35.204
I'm Chairman Sanders, Ranking Member Cassidy, and Distinguished Members of the Committee.

02:06:35.404 --> 02:06:38.944
My name is Tiffany Walker, and I'm Assistant Professor of Internal Medicine

02:06:38.944 --> 02:06:43.524
at Emory, Staff Physician at Grady Memorial Hospital, a large urban safety net hospital.

02:06:43.524 --> 02:06:49.084
I'm site PI for RecoverMedic Cohort and PI of multiple clinical trials in Long

02:06:49.084 --> 02:06:55.324
COVID, as well as the PI for the AHRQ Atlanta Long COVID Collaborative Center of Excellence.

02:06:55.664 --> 02:06:59.284
The views I express today are my own and do not reflect the views of my employer.

02:06:59.444 --> 02:07:03.624
I'm honored to provide this testimony today, and I aim to convey how imperative

02:07:03.624 --> 02:07:08.324
it is that we continue to invest and support research defining the biological

02:07:08.324 --> 02:07:11.844
drivers of Long COVID and the urgency to identify effective treatments.

02:07:12.444 --> 02:07:17.984
We have seen that anywhere from 15 to 38 percent of COVID survivors develop long COVID.

02:07:18.084 --> 02:07:22.364
To provide a stark comparison, this is commensurate to the rate of diabetes in our population.

02:07:23.924 --> 02:07:27.264
Long COVID can significantly impact patients' quality of life and function,

02:07:27.364 --> 02:07:30.604
and long haulers are more likely to be unemployed and work reduced hours,

02:07:30.744 --> 02:07:34.204
which has been addressed multiple times today, with recent CDC data supporting

02:07:34.204 --> 02:07:38.224
that over a quarter of long haulers suffer from significant activity limitations.

02:07:38.784 --> 02:07:42.804
Disease duration remains unknown. However, mounting evidence supports significant

02:07:42.804 --> 02:07:47.884
overlap with infection-associated chronic illnesses such as ME-CFS and dysautonomia.

02:07:48.004 --> 02:07:51.384
These are debilitating diseases that for many last lifelong.

02:07:52.960 --> 02:07:56.180
Economically disadvantaged populations have been disproportionately affected

02:07:56.180 --> 02:08:00.360
by long COVID, with African American and Hispanic Americans experiencing higher

02:08:00.360 --> 02:08:04.080
rates of long COVID and nuance at diabetes and cardiovascular disease.

02:08:05.400 --> 02:08:10.060
Impaired health literacy in economically disadvantaged populations impacts recognition

02:08:10.060 --> 02:08:12.380
of symptoms and therefore access to care.

02:08:13.380 --> 02:08:17.940
Furthermore, lack of coordination in long COVID care is amplified in these underserved

02:08:17.940 --> 02:08:22.260
minority populations that have longstanding history of poor access to affordable,

02:08:22.280 --> 02:08:25.140
quality health care. We absolutely see this in our greedy population.

02:08:25.660 --> 02:08:28.560
However, long COVID is not limited to this population.

02:08:29.100 --> 02:08:33.420
Although young, previously healthy adults have largely been spared from severe

02:08:33.420 --> 02:08:37.440
illness in the setting of acute COVID, it's important to highlight that long

02:08:37.440 --> 02:08:41.440
COVID can cause illness in anyone. And I think that we saw this today in our panel.

02:08:43.180 --> 02:08:47.120
Previously healthy patients who had mild acute COVID infections make up a significant

02:08:47.120 --> 02:08:49.900
portion the patients we're seeing in our long COVID clinics.

02:08:50.280 --> 02:08:54.720
In fact, CDC data suggests that adults aged 30 to 60 may be at highest risk,

02:08:54.940 --> 02:08:58.460
impacting our working-age adults and those of child-rearing ages.

02:08:59.940 --> 02:09:03.440
Congress' investment in the RECOVER initiative well positions researchers like

02:09:03.440 --> 02:09:06.720
myself to define the clinical scope of long COVID and characterize biological

02:09:06.720 --> 02:09:08.240
drivers of this disease.

02:09:08.560 --> 02:09:11.860
This is critical because a comprehensive understanding of the organ systems

02:09:11.860 --> 02:09:14.240
involved can guide clinical care.

02:09:14.340 --> 02:09:18.340
It can mitigate the unnecessary spending on extensive diagnostic workups,

02:09:18.440 --> 02:09:20.100
which is happening all the time.

02:09:20.820 --> 02:09:26.860
And defining these biological drivers helps us identify biomarkers that we can

02:09:26.860 --> 02:09:30.320
use to diagnose and monitor long COVID, which I know has been addressed already,

02:09:30.480 --> 02:09:32.820
as well as it helps facilitate...

02:09:34.361 --> 02:09:37.021
Identification of intervenable targets for drug development.

02:09:37.101 --> 02:09:39.441
So this is very important. We need to know what we're targeting.

02:09:40.001 --> 02:09:44.201
However, at this time, NHLBI anticipates concluding the cohort in May 2025.

02:09:44.821 --> 02:09:48.441
This decision does not account for the ongoing high COVID-19 case rate,

02:09:48.621 --> 02:09:52.501
protracted nature of long COVID symptoms, or concerning evidence of potentially.

02:09:53.621 --> 02:09:56.421
Immunodeficiency that warrants long-term monitoring in this population.

02:09:57.141 --> 02:10:01.601
Now is not the time to de-escalate funding for long COVID. Likewise,

02:10:02.341 --> 02:10:04.841
the RECOVER initiative hosts well-designed clinical trials.

02:10:05.041 --> 02:10:09.941
However, current funding is largely siloed through the RECOVER mechanism,

02:10:10.321 --> 02:10:13.541
stifling opportunities for further innovation.

02:10:14.241 --> 02:10:18.501
Despite RECOVER's best effort, the trials are often launching sequentially because

02:10:18.501 --> 02:10:22.921
there are finite resources for one institution to run all high-profile clinical

02:10:22.921 --> 02:10:24.801
trials for the entire U.S. population.

02:10:25.501 --> 02:10:28.681
Population. Trial funding needs to occur at a much greater scale and should

02:10:28.681 --> 02:10:30.261
not be limited to one consortium.

02:10:30.881 --> 02:10:34.281
Seasoned clinical trialists and long COVID experts providing care on the ground

02:10:34.281 --> 02:10:35.501
level should have input.

02:10:36.121 --> 02:10:41.841
I propose leveraging real-world data to capture patterns of off-label drug use

02:10:41.841 --> 02:10:47.561
to identify promising candidates that can be rapidly deployed in adaptive platform clinical trials.

02:10:47.761 --> 02:10:51.981
This winner-take-all trial design expedites drug development by using real-time

02:10:51.981 --> 02:10:58.041
data to reallocate patients to drugs showing efficacy and retire drugs showing futility.

02:10:58.761 --> 02:11:03.301
This results in reduced patients on placebo, reduced costs, reduced timelines.

02:11:04.741 --> 02:11:08.581
This model shows significant promise for sustainable infrastructure that can

02:11:08.581 --> 02:11:12.681
be rapidly scaled to identify treatments for future outbreaks of emergent infectious

02:11:12.681 --> 02:11:14.941
diseases, bolstering preparedness.

02:11:15.981 --> 02:11:19.661
So in summary, my recommendations are to expand Expand recovery initiative funding

02:11:19.661 --> 02:11:22.381
to support extension of the observational cohort.

02:11:23.281 --> 02:11:27.581
Expand funding for long COVID adaptive platform repurposed drug trials independent

02:11:27.581 --> 02:11:28.961
of the recovery mechanism.

02:11:29.621 --> 02:11:33.661
And then in closing, I would like to extend my humble gratitude to Senator Koehn

02:11:33.661 --> 02:11:36.981
and colleagues for advocating for the AHRQ Long COVID Initiative.

02:11:37.201 --> 02:11:40.861
This is a five-year effort that supports essential infrastructure to expand

02:11:40.861 --> 02:11:44.161
person-centered long COVID care across the U.S.

02:11:44.161 --> 02:11:49.121
And we feel strongly that this support will be paramount in improving care access

02:11:49.121 --> 02:11:54.341
and quality and will guide policy change and long COVID care delivery. Thank you so much.

02:11:55.121 --> 02:11:56.681
Thank you very much, Dr. Walker.

02:11:58.801 --> 02:12:02.401
First, I'm going to offer an apology. I've got an emergency leadership meeting

02:12:02.401 --> 02:12:07.901
in a while that I'm going to have to run out to, and I'll give the seat here

02:12:07.901 --> 02:12:10.441
over to Senator Baldwin. Okay.

02:12:12.422 --> 02:12:16.042
Let me start off with this. It goes without saying, I think,

02:12:16.042 --> 02:12:21.522
that many of us understand that at a time when we, A, have a major disease,

02:12:21.662 --> 02:12:29.382
which has been under-discussed, under-appreciated, that while we have put some

02:12:29.382 --> 02:12:34.222
federal funding and some good work has been done, much more needs to be done.

02:12:34.322 --> 02:12:38.942
So to my point, that's a given. All right. But what I want to go beyond that,

02:12:39.002 --> 02:12:41.482
and it's to ask all of you, starting with Dr.

02:12:41.582 --> 02:12:49.162
Harkins, is if I am an individual with long COVID, as people in this room are

02:12:49.162 --> 02:12:52.882
and people in another room are, the overflow room,

02:12:53.982 --> 02:12:58.142
give us some optimism here. Where do you think we can be going?

02:12:58.262 --> 02:13:04.182
Are we seeing any breakthroughs in terms of understanding the disease and providing

02:13:04.182 --> 02:13:09.622
in reasonably short term some treatments for people who are hurting very badly right now?

02:13:10.342 --> 02:13:15.702
Dr. Harkins? Thank you. Well, I know we all want answers yesterday because patients are suffering.

02:13:16.422 --> 02:13:21.942
I think looking globally and with the studies that are going on currently in

02:13:21.942 --> 02:13:24.262
the U.S., we are finding answers.

02:13:24.362 --> 02:13:29.822
We are finding trends. We are clustering patients into different subgroups.

02:13:31.030 --> 02:13:34.470
However, this is really complex. And as my colleagues have mentioned,

02:13:34.610 --> 02:13:37.270
it affects every organ system. All different cells are involved.

02:13:37.490 --> 02:13:41.310
And so trying to come up with a one-size-fits-all is not going to work.

02:13:41.450 --> 02:13:47.190
And so I think we're learning more about muscle dysfunction in the post-exertional

02:13:47.190 --> 02:13:50.290
malaise patients, for example. Now, what we do with that information,

02:13:50.410 --> 02:13:55.170
there's actual structural damage that occurs post-exercise.

02:13:55.190 --> 02:13:58.430
So what we do with that information now will be critical in,

02:13:58.510 --> 02:14:02.590
you know, what can we do to address that and improve their symptoms at the time,

02:14:02.610 --> 02:14:07.010
and educating providers so that the patients are heard and felt like they have

02:14:07.010 --> 02:14:09.470
a partner in this. Thanks, Dr. Al-Ali.

02:14:10.130 --> 02:14:14.410
We've made a lot of progress in understanding the biology of long COVID.

02:14:14.410 --> 02:14:17.510
We understand what happens in the brain, for example, in a lot of patients with

02:14:17.510 --> 02:14:18.750
long COVID, low cortisol level,

02:14:18.890 --> 02:14:24.090
low serotonin level, fusion of the neurons that actually disrupt cognition and

02:14:24.090 --> 02:14:28.110
neuroinflammation or inflammation in the brain and some structural abnormalities

02:14:28.110 --> 02:14:31.790
in the brain have been documented in people following SARS-CoV-2 infection.

02:14:32.310 --> 02:14:34.990
So I would understand. I mean, that's really only to talk about the brain.

02:14:35.090 --> 02:14:37.630
There's a lot of literature also on the heart and other aspects.

02:14:37.810 --> 02:14:43.510
We made a lot of improvement or progress in understanding the biology of long

02:14:43.510 --> 02:14:46.570
COVID. And also, we don't understand quite a bit the epidemiology of long COVID.

02:14:46.670 --> 02:14:50.050
We understand that, you know, vaccines work, reduce the risk of long COVID.

02:14:50.150 --> 02:14:53.170
We understand that to some extent, antivirals also reduce the risk of long COVID.

02:14:53.330 --> 02:14:56.470
We also understand that reinfection raises the risk of long COVID.

02:14:56.610 --> 02:15:02.750
So all of that understanding should feed into some optimism that we've made some progress.

02:15:03.070 --> 02:15:09.910
I think the major, major sort of a – we note lack of progress in clinical trials.

02:15:09.990 --> 02:15:13.450
As I indicated, they're too slow and too small to yield definitive answers.

02:15:13.850 --> 02:15:17.950
And really, for the person who is hurting from long COVID, they need that treatment yesterday.

02:15:18.330 --> 02:15:22.930
And while we've made progress in understanding the biology and epidemiology

02:15:22.930 --> 02:15:27.550
of long COVID, we definitely need trials at scale that match the urgency of

02:15:27.550 --> 02:15:29.590
the problem. Madhuk Prasad.

02:15:30.779 --> 02:15:34.399
Yes, I'd like to just reiterate what the other witnesses have said,

02:15:34.559 --> 02:15:37.219
that there's a lot that we understand about the biology.

02:15:37.499 --> 02:15:41.059
We do know that the clinical trials have been slow.

02:15:41.319 --> 02:15:45.639
There are some instances in which there have been issues with some of the treatments

02:15:45.639 --> 02:15:47.839
that are recommended for long COVID.

02:15:47.899 --> 02:15:52.819
In the early days, exercise was often recommended, even for patients without

02:15:52.819 --> 02:15:55.879
testing for post-exertional malaise.

02:15:55.879 --> 02:16:01.419
So I think right now we're really in a phase where there are about,

02:16:01.499 --> 02:16:07.039
I think, there are 12 trials that are registered in clinicaltrials.gov that

02:16:07.039 --> 02:16:08.499
are working on experimental medicines.

02:16:08.679 --> 02:16:14.179
And I think that we really need investment in this direction to really identify

02:16:14.179 --> 02:16:16.099
treatments that are working for patients.

02:16:17.139 --> 02:16:21.419
Dr. Walker. welcome. Yeah. To reiterate what many of the last panel mentioned,

02:16:21.519 --> 02:16:24.859
we've seen a lot of these patients that have really not been validated by their

02:16:24.859 --> 02:16:26.939
primary care providers or subspecialists.

02:16:27.059 --> 02:16:30.739
And that's because in our illness script as physicians, when we see a normal

02:16:30.739 --> 02:16:34.559
physical exam, we see a normal diagnostic workup, we're left with,

02:16:34.659 --> 02:16:36.939
oh, it seems like everything's okay. And clearly it's not.

02:16:37.119 --> 02:16:41.639
And so just to reiterate, understanding the pathobiological mechanisms not only

02:16:41.639 --> 02:16:45.079
helps us target medications, helps us understand the disease better,

02:16:45.079 --> 02:16:47.799
also provides credence to this disease.

02:16:47.899 --> 02:16:50.099
We can now point to something. This is a real disease.

02:16:50.259 --> 02:16:53.359
It cannot be refuted. There is scientific evidence of this.

02:16:53.479 --> 02:16:55.859
And so I think that's something that's really exciting that gives us hope.

02:16:55.959 --> 02:17:01.779
But again, it gives us targets that we can use in drug trials.

02:17:02.519 --> 02:17:05.979
I am assuming that my time is running out.

02:17:06.059 --> 02:17:09.059
I'm assuming that all of you believe that the federal government has got to

02:17:09.059 --> 02:17:13.179
play a much more active role with substantial sums of money for research,

02:17:13.299 --> 02:17:15.499
development, clinical clinical trials, et cetera, is that correct?

02:17:15.679 --> 02:17:17.679
Absolutely, yes. No doubt. All right.

02:17:22.959 --> 02:17:26.999
Senator Cassidy. I will defer to Senator Murkowski.

02:17:28.546 --> 02:17:30.126
Thank you, Mr. Chairman. Thank

02:17:30.126 --> 02:17:34.146
you, Ranking Member. Thank you all for your testimony here today. Dr.

02:17:34.306 --> 02:17:43.006
Harkins, I want to ask a question related to those who are struggling with long COVID in rural areas.

02:17:43.146 --> 02:17:46.946
As you know, my state is pretty rural.

02:17:47.146 --> 02:17:55.246
In addition to extraordinarily rural, we are also home to over half of our country's

02:17:55.246 --> 02:17:56.986
federally recognized tribes.

02:17:58.546 --> 02:18:03.866
And we got about 80% of our communities that are not on a road system.

02:18:04.066 --> 02:18:09.086
So access to care is always a challenge. But you had raised that recent CDC

02:18:09.086 --> 02:18:12.406
data marks more than 5,000 deaths from long COVID.

02:18:13.166 --> 02:18:16.946
And while long COVID death rates varied by race and ethnicity,

02:18:17.346 --> 02:18:22.006
they were the highest among American Indians and Alaska Natives.

02:18:22.006 --> 02:18:29.646
So I'd ask if you are aware of any research efforts that have been focused specifically

02:18:29.646 --> 02:18:33.086
on American Indians, Alaska Native population.

02:18:34.650 --> 02:18:40.450
Um, and, and I, I appreciate that it may be that the challenge has just been

02:18:40.450 --> 02:18:45.090
that access to that care, whether for, for diagnosis,

02:18:45.350 --> 02:18:50.310
for, for any level of, of ongoing care, um, may have challenged it.

02:18:50.690 --> 02:18:54.710
Um, but if you can speak to any research efforts that you're aware of,

02:18:54.730 --> 02:18:59.010
and then what your recommendations for ensuring that, um,

02:18:59.250 --> 02:19:04.090
just more of the marginalized population, specifically in our rural communities,

02:19:04.250 --> 02:19:09.510
receive the diagnosis and the follow-on treatment with regards to long COVID?

02:19:09.730 --> 02:19:10.970
Yes, thank you for your question.

02:19:11.390 --> 02:19:19.610
In New Mexico, also a very rural state with a large population of Native American as well,

02:19:19.770 --> 02:19:28.530
we don't have a very specific trial or focus just on our our American Indian

02:19:28.530 --> 02:19:30.810
and Native Alaskan population.

02:19:31.650 --> 02:19:39.290
And I think historically maybe we have not done well with research in this population.

02:19:39.430 --> 02:19:44.070
I think building a better partnership with our indigenous tribes and other tribal

02:19:44.070 --> 02:19:49.710
communities to want to help and share and listen to their input as to what is

02:19:49.710 --> 02:19:52.750
needed for clinical trials and other things in their community.

02:19:53.650 --> 02:19:59.390
I think, you know, they have to drive miles and miles and miles to come to a center.

02:19:59.430 --> 02:20:02.110
Or they can't drive at all. Or they can't drive at all, or they don't have money for gas.

02:20:03.090 --> 02:20:08.030
Exactly. And there's also the distrust of the research system.

02:20:08.930 --> 02:20:15.790
And I think coming to them, going to their communities in a partnership and

02:20:15.790 --> 02:20:23.770
maybe talking with them or getting the other folks to at least listening,

02:20:23.890 --> 02:20:28.410
listening and understanding what is needed and how can we encourage their participation.

02:20:28.950 --> 02:20:31.010
So let me ask about...

02:20:32.535 --> 02:20:37.595
About the opportunities through telehealth.

02:20:37.875 --> 02:20:42.655
You had highlighted HRSA's telehealth technology-enabled learning program initiative

02:20:42.655 --> 02:20:48.775
to help train local providers to identify patients with long COVID and then

02:20:48.775 --> 02:20:50.755
to work with the coordination.

02:20:52.015 --> 02:21:01.495
In Alaska, clearly, our community health centers are a critical component of our healthcare system.

02:21:01.495 --> 02:21:07.675
They really played a very key role in addressing the COVID pandemic.

02:21:08.655 --> 02:21:17.135
Can you share any examples of how recover grantees can use technologies in perhaps

02:21:17.135 --> 02:21:21.035
new or different ways to advance best practices,

02:21:21.895 --> 02:21:29.315
but really to allow for increased access to these clinical services?

02:21:29.315 --> 02:21:37.975
Services, again, through partnerships, because the distances aren't going to get any closer.

02:21:38.315 --> 02:21:44.515
If you don't have roads, to your point, the ability to fly is cost prohibitive.

02:21:44.815 --> 02:21:50.215
So we're talking about ongoing access and other partnerships through perhaps

02:21:50.215 --> 02:21:53.315
telehealth and others in our our community health centers. Sure.

02:21:53.715 --> 02:22:02.375
You know, through our Project ECHO program, we reach many providers and trying to educate them.

02:22:02.535 --> 02:22:09.175
But I think also we need to have access for patients to actually visit with

02:22:09.175 --> 02:22:12.715
physicians in a multidisciplinary COVID clinic.

02:22:12.855 --> 02:22:18.835
That's going to to take a lot of other work to do, but I think having education,

02:22:19.135 --> 02:22:23.855
broadband technology also is an issue, getting that to the patient homes.

02:22:24.455 --> 02:22:28.155
But I think setting up regional centers where.

02:22:29.035 --> 02:22:33.455
Potentially the primary care provider that is in that community can be a partner

02:22:33.455 --> 02:22:38.835
in the learning loops and then being able to understand the diagnosis and then

02:22:38.835 --> 02:22:39.955
take that to their patient.

02:22:40.515 --> 02:22:45.535
So I think that telehealth is really going to be the answer for educating the

02:22:45.535 --> 02:22:50.155
providers that can then bring the treatments and recommendations to their patients

02:22:50.155 --> 02:22:52.695
in their communities that are very rural.

02:22:52.775 --> 02:22:57.175
So that the provider is the treater and the patients don't have to come to the

02:22:57.175 --> 02:23:00.255
bigger academic center. Thank you, Mr. Chairman.

02:23:01.735 --> 02:23:03.615
Thank you. Senator Baldwin.

02:23:05.235 --> 02:23:09.995
Thank you, Mr. Chairman. And I want to thank this panel of witnesses.

02:23:10.135 --> 02:23:16.175
I also want to thank the previous panel of witnesses for coming here,

02:23:16.295 --> 02:23:23.615
for telling your stories, and keeping this front and center.

02:23:24.275 --> 02:23:26.955
We have to do that. Thank you.

02:23:28.430 --> 02:23:33.570
With zero FDA-approved medications for people who are suffering from long COVID,

02:23:34.370 --> 02:23:39.950
we just know people are suffering, and we have to increase the sense of urgency.

02:23:40.550 --> 02:23:44.950
I want to ask a couple of specific questions. As several of our witnesses today

02:23:44.950 --> 02:23:52.370
have noticed, it's vital that we continue to support research into our long COVID.

02:23:53.470 --> 02:23:56.490
To better understand, prevent, and treat the disease. these.

02:23:56.790 --> 02:24:03.050
Congress has previously allocated $1.15 billion to fund NIH research on long

02:24:03.050 --> 02:24:06.070
COVID through a multi-pronged research network.

02:24:06.290 --> 02:24:14.550
However, I know that NIH has received critical feedback regarding its approach to this research,

02:24:14.790 --> 02:24:20.910
including the fear that it may not deliver any meaningful treatments to people

02:24:20.910 --> 02:24:22.270
suffering from long COVID.

02:24:22.490 --> 02:24:28.710
So I want to ask a couple of you to describe any concerns you might have with

02:24:28.710 --> 02:24:34.670
the NIH RECOVER program and highlight the possible opportunities for oversight

02:24:34.670 --> 02:24:40.090
and accountability within this program so that the NIH can better respond to

02:24:40.090 --> 02:24:42.330
the needs of patients with long COVID.

02:24:42.510 --> 02:24:45.770
And I want to add just a little bit to, you know, Dr.

02:24:45.870 --> 02:24:51.670
Harkins, you talked about one approach is to looking at clusters since this

02:24:51.670 --> 02:24:56.350
is multi-system On the other hand, Dr.

02:24:56.450 --> 02:25:08.070
Alali, you talked about an institute for a greater number of infection-associated

02:25:08.070 --> 02:25:15.490
chronic illnesses that are complex and multisystemic in nature.

02:25:15.490 --> 02:25:20.230
And so it's kind of like you're taking it apart, you're putting more together.

02:25:20.510 --> 02:25:24.170
I just want to hear a little bit more about where you would take that.

02:25:24.210 --> 02:25:26.430
So Dr. Harkins and Dr. Al-Ali.

02:25:27.370 --> 02:25:34.970
Thank you. I think the recover initiative is really trying to gather data and

02:25:34.970 --> 02:25:37.290
follow patients and really understand the disease.

02:25:37.590 --> 02:25:42.190
We want to be able to do treatments, and the treatment trials are taking a while

02:25:42.190 --> 02:25:50.250
to get going, yes. But the problem is one treatment isn't going to be available

02:25:50.250 --> 02:25:51.750
to fix everything, right?

02:25:51.850 --> 02:25:58.790
So all of these patients, we need to find out, well, what is driving the post-exertional malaise?

02:25:58.890 --> 02:26:03.170
What are the drivers for the respiratory and the cardiac complications?

02:26:03.170 --> 02:26:10.090
And then how can we devise research treatment plans for both of those?

02:26:10.090 --> 02:26:16.570
Because doing one thing and then having everybody join in, you're not going to see a result, I think.

02:26:16.610 --> 02:26:23.890
You have to have it very clarified for your specific patient population to see a benefit is my feeling.

02:26:24.030 --> 02:26:28.050
That's going to take time, unfortunately, and that's what everyone is frustrated with. Right.

02:26:29.295 --> 02:26:33.375
I think the major question that we need to really solve is why acute infections

02:26:33.375 --> 02:26:37.635
that we've trivialized for centuries, for centuries we trivialized acute infections,

02:26:37.875 --> 02:26:40.695
why acute infections in some cases lead to chronic disease.

02:26:40.995 --> 02:26:43.695
I think this pandemic is telling us, it's giving us really clues that,

02:26:43.775 --> 02:26:47.095
you know, SARS-CoV-2 infection in most people, they do just fine,

02:26:47.215 --> 02:26:49.295
but some people succumb to long COVID.

02:26:49.715 --> 02:26:53.195
And then we look back in the history books, it actually happened after the flu.

02:26:53.395 --> 02:26:56.415
It actually, you know, look at the ME-CFS, it's also thought to be driven by

02:26:56.415 --> 02:26:59.435
viral illness. So I think the solution here is to try to really more deeply

02:26:59.435 --> 02:27:02.255
understand why acute infections lead to chronic disease.

02:27:02.475 --> 02:27:06.715
This requires really a comprehensive approach to really understand the mechanisms

02:27:06.715 --> 02:27:10.135
of why viruses that actually produce acute infections lead to chronic disease,

02:27:10.295 --> 02:27:13.835
understand the epidemiology, and also dissect therapeutic pathways.

02:27:14.115 --> 02:27:18.175
This really requires an all-hands-on-deck situation and a really broad,

02:27:18.395 --> 02:27:21.815
comprehensive approach, interdisciplinary approach that should be solved,

02:27:21.895 --> 02:27:24.875
in my view, in the form of a new institute to tackle this issue. true.

02:27:24.955 --> 02:27:27.975
This will not only help you address the issue of long COVID,

02:27:28.155 --> 02:27:33.255
it will also help us solve the puzzle of ME-CFS and all other infection-associated

02:27:33.255 --> 02:27:38.155
chronic conditions that have been ignored for decades and help us prepare for the next pandemic.

02:27:38.475 --> 02:27:41.935
So one thing, one certainty in life is that we're going to be hit with another pandemic.

02:27:42.155 --> 02:27:44.715
We just don't know if this is going to be five years from now,

02:27:44.875 --> 02:27:46.835
10 years from now, or 30 years from now.

02:27:46.935 --> 02:27:51.075
And it is important that we learn the lessons from this virus today to really

02:27:51.075 --> 02:27:53.155
face the rough waters of future pandemics.

02:27:53.295 --> 02:27:58.315
We would be We all in failure if our children face a future pandemic and get

02:27:58.315 --> 02:28:02.495
hit with another long something, long virus, you know, 2020,

02:28:02.755 --> 02:28:05.555
2030 or something, and they don't know how to treat it.

02:28:05.675 --> 02:28:08.195
That would represent our collective failure.

02:28:08.335 --> 02:28:11.375
And we really, really need to understand this now. And I think this is really

02:28:11.375 --> 02:28:13.955
the time is now to understand infection associated chronic diseases.

02:28:14.635 --> 02:28:18.595
Thank you. I ran out of time for my question for Dr. Walker,

02:28:18.735 --> 02:28:21.435
but maybe I'll stick around and see if we can get another round.

02:28:23.542 --> 02:28:24.422
Senator Cassie?

02:28:27.662 --> 02:28:30.082
Oh, thank you. Oh, my goodness.

02:28:32.362 --> 02:28:38.402
All right. So last year, we came together to provide $10 million in new funding

02:28:38.402 --> 02:28:42.862
for the Agency for Healthcare Research and Quality's patient-centered coordinated

02:28:42.862 --> 02:28:46.442
care for those living with long COVID, including new care models.

02:28:46.442 --> 02:28:53.382
I was proud to work with colleagues to continue this funding in our proposed

02:28:53.382 --> 02:28:58.242
Senate fiscal year 2024 bill.

02:28:59.342 --> 02:29:03.982
And I certainly want to work with our colleagues in the House to get this over the finish line.

02:29:04.082 --> 02:29:09.902
But Dr. Walker, can you talk about the importance of that AHRQ funding for long

02:29:09.902 --> 02:29:14.762
COVID and the gaps that would exist without it? Yeah, thank you so much for that question.

02:29:14.862 --> 02:29:17.222
Thank you so much for advocating for that funding.

02:29:17.682 --> 02:29:21.342
I think it will be really essential in being able to expand the care that we

02:29:21.342 --> 02:29:22.522
provide to long COVID patients.

02:29:23.502 --> 02:29:28.662
So just to give a context, it is a multisystemic, complex disease,

02:29:28.802 --> 02:29:33.702
and primary care physicians at this stage are unprepared to manage this novel disease.

02:29:34.602 --> 02:29:38.242
It's an extensive workup for these patients and labor intensive.

02:29:38.242 --> 02:29:43.062
Of... So these patients, as you've already heard, are oftentimes passed back

02:29:43.062 --> 02:29:46.582
and forth between subspecialists because of this most systemic nature.

02:29:47.022 --> 02:29:48.422
And I've heard of

02:29:48.578 --> 02:29:52.158
patients seeing 30 subspecialists before they make it to a long COVID clinic.

02:29:52.398 --> 02:29:58.238
Yeah, that's absolutely true. And so these extensive diagnostic workups that

02:29:58.238 --> 02:30:03.278
come with this as well is burdensome for the patient, burdensome for the healthcare

02:30:03.278 --> 02:30:07.238
system, and long COVID clinics are equipped to see these patients.

02:30:07.398 --> 02:30:11.498
The problem with that is we're rare. Many of us are closing doors.

02:30:12.018 --> 02:30:16.938
So the clinics are dwindling. So having the support is really important,

02:30:16.998 --> 02:30:21.178
especially since we received these referrals and we've become pretty saturated

02:30:21.178 --> 02:30:22.898
in our clinics to be able to see these patients.

02:30:23.438 --> 02:30:29.138
So this initiative is a five-year initiative that funds nine long COVID centers

02:30:29.138 --> 02:30:30.878
of excellence across the U.S.

02:30:30.898 --> 02:30:34.058
So it has a demographically distributed population.

02:30:34.798 --> 02:30:38.478
And what we're able to do with it is really expand care.

02:30:38.578 --> 02:30:41.338
So we're able to hire additional staff, care coordination staff.

02:30:41.418 --> 02:30:45.358
So it's really a person-centered coordinated care model.

02:30:45.718 --> 02:30:49.358
We're very interested in the patient voice and have patient advisory committees.

02:30:49.458 --> 02:30:51.958
We are engaging with the community and community allies.

02:30:52.118 --> 02:30:57.398
So we know what the community feels about long COVID, how we can increase community-based

02:30:57.398 --> 02:31:01.238
referrals and that we're meeting the needs of the community.

02:31:01.498 --> 02:31:05.418
And it also includes a component where we have an iterative evaluation component,

02:31:05.598 --> 02:31:10.238
again, with the patient voice so that we can continue to improve these care

02:31:10.238 --> 02:31:13.738
models for long COVID and then hopefully guide policy.

02:31:14.058 --> 02:31:17.298
And then the last thing I'll mention is because I mentioned the primary care

02:31:17.298 --> 02:31:21.338
physicians and just a lack of understanding of long COVID, there's a very robust

02:31:21.338 --> 02:31:25.798
plan in place to provide peer education through ECHO,

02:31:25.978 --> 02:31:32.698
through primary care roadshows, through webinars, and multiple education series.

02:31:32.698 --> 02:31:38.218
So, we're hoping to eventually decentralize the care of long COVID in the long run.

02:31:38.778 --> 02:31:42.538
Again, if 20 million individuals in the U.S. have long COVID,

02:31:42.718 --> 02:31:45.238
they can't be cared for in only these long COVID centers.

02:31:48.110 --> 02:31:53.510
All right, Chairman, thank you so much. Let me, again, if you hear frustration, it's my voice.

02:31:53.550 --> 02:31:58.490
It's again, because one of my very closest loved one has been incapacitated for two years.

02:31:58.870 --> 02:32:04.670
We're one of those families where our loved one has seen 30 doctors.

02:32:05.090 --> 02:32:09.130
And if you can find, there are not many long COVID clinics around.

02:32:09.430 --> 02:32:14.530
But let me add my frustration with NIH. NIH. As Senator Baldwin pointed out,

02:32:14.570 --> 02:32:17.050
we gave them over a billion dollars December of 2020.

02:32:17.830 --> 02:32:21.850
They've been focused on, as I call it, forming committees and praying about

02:32:21.850 --> 02:32:27.870
it, but they're focused on risk factors and causes as opposed to diagnosis and treatment.

02:32:28.830 --> 02:32:32.970
I really, you know, for Senator Sanders' team, I think we should have NIH come

02:32:32.970 --> 02:32:37.390
in, and I'm not pointing, I am pointing a finger, but it's their processes.

02:32:37.430 --> 02:32:38.450
They're not streamlined.

02:32:38.830 --> 02:32:42.250
I think you give somebody a billion dollars, we could have some studies done

02:32:42.250 --> 02:32:45.490
on diagnosis and treatment.

02:32:46.250 --> 02:32:51.690
And I would suggest that this committee is maybe giving this type of money more

02:32:51.690 --> 02:32:56.430
to BARDA, which seems to be more streamlined, more focused on working with the private sector.

02:32:56.970 --> 02:33:02.090
We keep repeating these same mistakes. We can't take two years just to get geared up.

02:33:04.170 --> 02:33:09.370
So I hope we come back with NIH. We We talked about funding BARDIS somehow, some way.

02:33:10.030 --> 02:33:15.050
At its core, long COVID is a vascular disease.

02:33:16.190 --> 02:33:20.730
It's about immune dysfunction. It's almost like an autoimmune reaction gone

02:33:20.730 --> 02:33:24.250
crazy, and the spike protein's the pathogen. We know that.

02:33:26.415 --> 02:33:30.995
And from the doctors on the cutting edge in the private sector,

02:33:31.095 --> 02:33:35.395
they're getting cytokine panels and coagulation workups, plasminogen activation

02:33:35.395 --> 02:33:38.775
inhibitors, fibrin monomer dimers.

02:33:39.275 --> 02:33:45.915
There's micro clots going on too small for us to see on the typical scans that we would use.

02:33:46.755 --> 02:33:51.935
So those are the types of things I wish we were studying to say, well, here's normal.

02:33:52.055 --> 02:33:55.255
Here's what's happening in COVID patients, those types of things. Dr.

02:33:55.475 --> 02:33:59.795
Al-Ali, are you doing any of those types of blood work, these cytokine panels, that type of thing?

02:34:00.315 --> 02:34:05.495
Not in my lab, but I definitely endorse the idea that we need to find treatments

02:34:05.495 --> 02:34:07.635
as soon as possible. That's really very important.

02:34:07.915 --> 02:34:11.335
The research enterprise should be oriented to address the problems that people

02:34:11.335 --> 02:34:13.995
care about most, which is really treatment. I definitely agree.

02:34:14.275 --> 02:34:19.115
Right. But it would be great in the primary care setting if there was a long COVID panel.

02:34:20.715 --> 02:34:25.155
Like a hepatitis panel, we need a long COVID panel. panel, and then our primary

02:34:25.155 --> 02:34:27.815
care doctors could identify this and say, yes, indeed.

02:34:28.215 --> 02:34:32.435
And then maybe based upon that, we decide if we're going to use some off-label

02:34:32.435 --> 02:34:36.875
drugs like Plaquenol, or maybe we're using acyclovir because we've stirred up

02:34:36.875 --> 02:34:39.675
the Epstein-Barr virus, that type of thing as well.

02:34:39.875 --> 02:34:44.435
Does anybody in the panel have any experience using off-label drugs to treat this with some success?

02:34:45.055 --> 02:34:49.495
Plaquenol is what comes to mind to me. Dr. Walker, you're kind of shaking your your head, yes?

02:34:49.815 --> 02:34:53.695
Yeah, I mean, there's some evidence for medications like low-dose naltrexone

02:34:53.695 --> 02:34:56.035
that have already been used in the ME-CFS population.

02:34:56.355 --> 02:34:59.095
There's some observational data out of Stanford using this medication.

02:34:59.315 --> 02:35:01.855
It doesn't work for everybody, but it is very beneficial for some.

02:35:02.035 --> 02:35:04.575
And I think that we need to focus not only on curative treatments,

02:35:04.695 --> 02:35:07.895
because of course that makes sense, but as you heard the panel say today,

02:35:07.995 --> 02:35:11.915
we just need medications that will cause some relief of symptoms as we're trying

02:35:11.915 --> 02:35:14.655
to learn more about this disease and find treatments for it.

02:35:15.649 --> 02:35:19.469
Dr. Ali, are you using any medicines off-label with success?

02:35:19.869 --> 02:35:21.349
I would endorse publicly, but

02:35:21.349 --> 02:35:26.589
again, the way we know about what works and what doesn't is to do trials.

02:35:26.869 --> 02:35:29.509
I mean, that's really how we know systematically what works and what doesn't, right?

02:35:29.849 --> 02:35:33.089
Anecdotally, there are a lot of things that people say that these things might

02:35:33.089 --> 02:35:39.249
work, but I think we need to accelerate trials so we actually find out what works and what doesn't.

02:35:39.269 --> 02:35:42.169
So, I'm all for the longitudinal studies, and of course, you know,

02:35:42.169 --> 02:35:43.969
those take years as opposed to days.

02:35:43.969 --> 02:35:47.069
I think that we could even start with just some retrospective studies in the

02:35:47.069 --> 02:35:51.629
machine learning to say, okay, what patients have been given Plaquenil?

02:35:51.629 --> 02:35:55.309
What patients have been given acyclovir? Which one is it, Neurotin?

02:35:56.229 --> 02:36:00.549
Low-dose naltrexone. Naltrexone as well. Some of those, just to see.

02:36:00.629 --> 02:36:04.229
And yes, I'm all for the longitudinals, but desperate times call for desperate

02:36:04.229 --> 02:36:08.509
measures, and doctors can't be persecuted for,

02:36:08.709 --> 02:36:12.349
you know, I use off-label medicines every day, but it It seems like if you use

02:36:12.349 --> 02:36:16.369
off-label medicines in COVID, you're going to go to COVID hell and be censored.

02:36:17.289 --> 02:36:21.409
So I don't get what the double standard is all about. Senator, we're on the same page.

02:36:21.509 --> 02:36:25.609
We actually believe very firmly in the value of observational research to really

02:36:25.609 --> 02:36:27.989
inform a lot of our policy discussions.

02:36:28.329 --> 02:36:33.529
But at the same time, we also need to really accelerate the conduct of trials

02:36:33.529 --> 02:36:36.709
so we actually definitely know what works and what doesn't.

02:36:36.809 --> 02:36:40.849
And those are complementary approaches. And we definitely – most of my lab really

02:36:40.849 --> 02:36:44.589
runs on observational research, and I definitely endorse the idea that observational

02:36:44.589 --> 02:36:45.509
research can teach us a lot.

02:36:45.689 --> 02:36:50.069
And as a matter of fact, it has taught us a lot about COVID and long COVID in the past four years.

02:36:50.129 --> 02:36:54.449
Most of what we know is from that line of research. So we're on the same page. Thank you.

02:36:55.889 --> 02:36:59.069
Mr. Shipman, you're back. Thank you. Thank you.

02:37:00.129 --> 02:37:03.969
First, thank you all for – I haven't gone yet.

02:37:05.129 --> 02:37:10.389
I thought you were wrapping up. No, I would never think such a thing.

02:37:10.509 --> 02:37:15.269
Wouldn't even consider it without checking to my co-chair.

02:37:16.149 --> 02:37:19.709
Thank you all for coming. Know how busy you are and how seriously you take this.

02:37:19.789 --> 02:37:24.429
You've been, you really brought to light a number of different facets that haven't

02:37:24.429 --> 02:37:25.389
really been considered.

02:37:25.549 --> 02:37:30.189
I want to ask each of you, and we'll start with you, Dr. Ali. Yeah.

02:37:32.357 --> 02:37:36.657
Do you think there's potential of directing artificial intelligence?

02:37:37.037 --> 02:37:41.557
I mean, we've heard so many different novel cases, sets of symptoms in different

02:37:41.557 --> 02:37:49.497
circumstances and all the different variables that go into the biotics of the

02:37:49.497 --> 02:37:52.197
gut and we've all been hearing about.

02:37:52.357 --> 02:37:57.737
Do you think AI is a potential, A, for in diagnosis, being able to get a faster

02:37:57.737 --> 02:38:03.177
solution to diagnosis, but then also in terms of getting to some appropriate medications.

02:38:04.037 --> 02:38:07.917
Absolutely, yes. So, AI can teach us a lot about the biology of long COVID,

02:38:08.017 --> 02:38:12.337
why the virus with its current structure and evolving structure can actually lead to chronic damage.

02:38:12.577 --> 02:38:16.617
You know, definitely leveraging technologies like AI to solve this problem is really important.

02:38:16.817 --> 02:38:21.617
It can also help us identify therapeutic pathways and can really also sift through,

02:38:21.697 --> 02:38:26.117
you know, the trillions of data bits that are available to us in the U.S.

02:38:26.117 --> 02:38:31.417
To help us identify patterns and potentially also treatments at work.

02:38:31.597 --> 02:38:35.297
So leveraging, this is an all hands on deck situation, leveraging technologies

02:38:35.297 --> 02:38:38.617
like AI and actually the might of people who really, you know,

02:38:38.617 --> 02:38:43.797
do very well and, you know, very advanced AI to help us solve long COVID is

02:38:43.797 --> 02:38:44.737
going to be very, very important.

02:38:45.017 --> 02:38:47.257
Definitely. Anybody want to add something to that?

02:38:47.977 --> 02:38:53.597
That? Yes, I'd just like to add that systems like OpenAI that we see right now,

02:38:53.737 --> 02:38:57.857
those are really successful because of the fact that we put everything on the

02:38:57.857 --> 02:39:00.137
internet, all of our business, all the time, all the time.

02:39:00.277 --> 02:39:04.057
And so the problem with EHR systems is we don't have all this data structured.

02:39:04.197 --> 02:39:06.177
We don't all have it available in one place.

02:39:06.337 --> 02:39:10.177
If I'm looking at patients in my system, I don't necessarily know every single

02:39:10.177 --> 02:39:11.317
health center they've been to.

02:39:11.457 --> 02:39:15.357
I don't know when they picked up their prescriptions. I don't know all of this information.

02:39:15.657 --> 02:39:20.117
And so in order for observational systems to be able to leverage AI for this.

02:39:20.217 --> 02:39:24.397
We need a better investment in the data and information that is available,

02:39:24.577 --> 02:39:29.077
how it's centralized, how you're able to track and get a comprehensive picture for patients.

02:39:30.077 --> 02:39:31.757
Absolutely. Anyone else?

02:39:33.202 --> 02:39:36.822
I totally agree. I mean, our systems don't talk to each other,

02:39:36.902 --> 02:39:41.022
so we don't have all of the basic information of what patients have tried, et cetera.

02:39:41.102 --> 02:39:43.282
So AI has its limitations in that way.

02:39:44.082 --> 02:39:49.902
But I think it could identify potentially agents that many patients are using

02:39:49.902 --> 02:39:52.522
and then take that forward for trials.

02:39:52.842 --> 02:39:54.662
I think there's the great possibility.

02:39:55.142 --> 02:40:00.082
Dr. Wark, do you want to add anything to that? Yeah, and this is somewhat adjacent to that discussion.

02:40:00.082 --> 02:40:06.162
But similarly, FDA and NCATS already support a platform that allows capture

02:40:06.162 --> 02:40:10.382
of repurposed drug data of what people are using off-label and physicians.

02:40:10.782 --> 02:40:14.482
And we can sort through this data to find medications that might be helpful

02:40:14.482 --> 02:40:18.522
to be then deployed in randomized clinical trials.

02:40:18.702 --> 02:40:23.822
And so not specifically AI, but similar use of this existing real-world data.

02:40:24.182 --> 02:40:29.442
Yeah. Yeah. I think it does come back to what Dr. Matlick-Brown said in terms of N3C.

02:40:30.082 --> 02:40:36.302
We got to get all the data connected and be able to look at without ever revealing

02:40:36.302 --> 02:40:41.142
a patient's name, but understanding how many different patients have had these different symptoms,

02:40:41.302 --> 02:40:46.302
have had these different conditions, have had microclots, whatever the circumstances

02:40:46.302 --> 02:40:49.142
are, and begin to analyze that more carefully.

02:40:49.802 --> 02:40:51.122
Again, I'll start with Dr. Ali.

02:40:52.142 --> 02:40:55.822
Do you think we are going to get at other pandemics. There's no question.

02:40:55.922 --> 02:41:00.622
For some reason, Congress doesn't seem willing to fund the basic preparation

02:41:00.622 --> 02:41:05.402
to be prepared for that next pandemic, which we're still working on.

02:41:05.482 --> 02:41:07.202
Well, I do believe we'll get there.

02:41:07.702 --> 02:41:11.682
But should we also be looking at considering changes in some of the guidelines

02:41:11.682 --> 02:41:13.422
we issued for transportation.

02:41:14.402 --> 02:41:18.922
How many air changes we have in an elevator or in an an airplane,

02:41:19.182 --> 02:41:23.922
whether the new air comes in high or comes in low, buildings,

02:41:24.142 --> 02:41:25.482
how often the air changes.

02:41:25.622 --> 02:41:29.662
Is that, now that we're beginning to understand this type of pandemic and knowing

02:41:29.662 --> 02:41:35.042
we'll get another, shouldn't we be considering more carefully how we build things in the future?

02:41:35.322 --> 02:41:40.482
Yes, yes. So investment in air filtration and ventilation air filtration systems

02:41:40.482 --> 02:41:41.642
is going to be very, very important.

02:41:41.842 --> 02:41:45.202
Updating building codes to actually require them is going to be very important.

02:41:45.402 --> 02:41:49.182
Let me give you an example. We actually, you know, earthquake-proof buildings

02:41:49.182 --> 02:41:53.722
for earthquakes that happen once every 50 years or 100 years.

02:41:53.942 --> 02:41:58.642
We invest millions of dollars in making buildings earthquake-proof or seismically proof, right?

02:41:58.722 --> 02:42:03.662
Why can't we do the same thing to really make sure that our buildings are proof

02:42:03.662 --> 02:42:06.722
against natural hazards like airborne pathogens, right?

02:42:06.822 --> 02:42:10.182
So this is very, very important. One of the lessons that we learned from this

02:42:10.182 --> 02:42:17.542
pandemic is that pathogens could be transmitted in the air, like SARS-CoV-2 or airborne pathogens.

02:42:17.842 --> 02:42:21.502
And one way to protect or to reduce the chance of transmission and infection

02:42:21.502 --> 02:42:24.002
is to clean the air in indoor buildings.

02:42:24.222 --> 02:42:28.602
And one of the pathways to do that is investment and updating building codes

02:42:28.602 --> 02:42:31.442
to require better ventilation and air filtration systems.

02:42:36.504 --> 02:42:40.784
I couldn't agree more. And think of all the auxiliary, the accessory health

02:42:40.784 --> 02:42:43.164
benefits we would get from those kinds of investments.

02:42:44.184 --> 02:42:47.944
Our study is demonstrating that actually kids perform better in schools when

02:42:47.944 --> 02:42:50.844
they have better air filtration and air ventilation systems.

02:42:51.184 --> 02:42:54.584
They actually perform better in schools. That's really been done.

02:42:54.844 --> 02:42:56.764
And again, we do the same thing for earthquakes.

02:42:57.024 --> 02:43:00.084
And in some instances, earthquakes don't have— With much less benefit. Absolutely.

02:43:00.724 --> 02:43:04.244
Absolutely. I see all four of you nodding your head, so I think we can say we

02:43:04.244 --> 02:43:06.064
have a consensus here in that.

02:43:06.624 --> 02:43:09.884
I'm out of time, but I'll come back since I'm now sitting in for the chair.

02:43:09.984 --> 02:43:12.304
I get to decide whether we keep you for a few minutes longer.

02:43:12.944 --> 02:43:17.764
Promise to put it to use. Senator Cassidy. You give a man a microphone and all

02:43:17.764 --> 02:43:18.864
of a sudden you can't control him.

02:43:20.664 --> 02:43:24.804
Hey, thank you all. Thank you for what you're doing and for all of your physician

02:43:24.804 --> 02:43:28.004
colleagues and researcher colleagues whom you represent. I really appreciate that. Okay.

02:43:29.064 --> 02:43:32.124
So my questions, I've got a bunch of them.

02:43:33.324 --> 02:43:38.184
First, I just want to make the point that there's been a lot of effort here,

02:43:38.244 --> 02:43:40.004
a lot of discussion about the NIH

02:43:40.004 --> 02:43:43.724
to do more to hopefully develop these therapeutics as rapidly as possible.

02:43:43.904 --> 02:43:46.984
I will point out something which is counterproductive and which has been shown

02:43:46.984 --> 02:43:49.084
to be counterproductive, which is the most frustrating thing,

02:43:49.204 --> 02:43:55.704
which is the administration is pushing that if there are cures with NIH money,

02:43:55.884 --> 02:43:59.984
that the federal government can march in and dictate whether or not the intellectual

02:43:59.984 --> 02:44:02.604
property is taken if they don't like the price.

02:44:02.944 --> 02:44:07.344
That has been shown in the past to inhibit investment by the private sector.

02:44:07.684 --> 02:44:11.164
And it's very populist. It probably does well on a campaign trail.

02:44:11.404 --> 02:44:12.824
It's going to be bad for this.

02:44:13.084 --> 02:44:15.704
And I'm just going to make that point because we've made it before,

02:44:15.864 --> 02:44:19.904
but maybe this is the time that will actually mean something to people to actually

02:44:19.904 --> 02:44:24.644
promote development as opposed to promote a populist appeal. Next.

02:44:25.844 --> 02:44:30.784
Dr. Harkin. A lot of conversation. Dr. Walker mentioned Project ECHO 2.

02:44:31.024 --> 02:44:33.664
You're from the hometown of Project ECHO.

02:44:33.924 --> 02:44:38.244
How effective has ECHO been in terms of transmitting?

02:44:38.304 --> 02:44:43.144
What is the uptake among primary care providers logging on to hear from you or Dr.

02:44:43.344 --> 02:44:46.064
Walker or whomever as to how to better manage these patients?

02:44:46.804 --> 02:44:51.544
Thank you for the question. You know, we have over 100 participants in this

02:44:51.544 --> 02:44:54.744
particular post-COVID primary care ECHO program that we're running.

02:44:55.744 --> 02:44:58.564
Now, participants are sites or participants are individual physicians?

02:44:58.604 --> 02:45:02.544
Individual participants and the majority are practitioners.

02:45:02.984 --> 02:45:09.024
So, 100 different doctors? 800. 800. I'm sorry. Yes, 800. And so—.

02:45:10.373 --> 02:45:14.793
What we're seeking are case presentations from these patients,

02:45:14.913 --> 02:45:19.933
from the providers, but they were uncomfortable or not knowing how to diagnose

02:45:19.933 --> 02:45:21.373
long COVID. Is it long COVID?

02:45:21.553 --> 02:45:23.993
So we have done case-based presentations.

02:45:24.393 --> 02:45:29.913
I get that, but I have limited time. So we have efficacy data where they feel

02:45:29.913 --> 02:45:31.713
more comfortable. We are doing polls.

02:45:32.013 --> 02:45:36.233
They can actually answer the questions. Now, yes, this meets a long COVID diagnosis.

02:45:36.493 --> 02:45:39.793
Yes, this would be the next step to do. And as Dr. Walker, you had said you

02:45:39.793 --> 02:45:41.713
need to decentralize the management of this.

02:45:41.813 --> 02:45:45.893
Are you finding these roadshows and these ECHO programs decentralizing the management yet?

02:45:46.093 --> 02:45:49.133
These are just being launched now as AHRQ was just funded.

02:45:49.373 --> 02:45:53.073
I don't expect that we'll be decentralized soon. This is a five-year endeavor,

02:45:53.133 --> 02:45:56.173
and I expect that we'll need to have that full five years, if not longer.

02:45:56.413 --> 02:45:59.893
It's a very complex disease, but during these five years, there'll be a very

02:45:59.893 --> 02:46:04.933
intensive capacity-building effort amongst primary care physicians within our regions.

02:46:05.153 --> 02:46:09.153
Sounds great. Dr. Ali, let me just ask you because it begs to be answered.

02:46:09.613 --> 02:46:12.573
We do know some of the path – I've been sitting up here reading my PubMed.

02:46:14.013 --> 02:46:17.533
So we do know that there's different pathological mechanisms by which it is

02:46:17.533 --> 02:46:18.893
theorized COVID would do this.

02:46:19.093 --> 02:46:23.373
In some cases, it's immunologic dysregulation.

02:46:23.673 --> 02:46:27.673
Other places, it's gut dysbiosis. In other cases, it's thrombi.

02:46:27.873 --> 02:46:29.773
But there are specific treatments for each of those.

02:46:30.393 --> 02:46:35.133
For example, one of our witnesses said that her daughter had been given a colonoscopy,

02:46:35.273 --> 02:46:38.673
put on probiotics, which could be irritable bowel syndrome superimposed,

02:46:38.673 --> 02:46:39.533
but nonetheless, it worked.

02:46:40.193 --> 02:46:42.973
So I guess I'm a little bit, and I know there's an answer for this.

02:46:43.533 --> 02:46:47.873
I presume the approach is, wait a second, here we have studies showing that

02:46:47.873 --> 02:46:49.353
thrombi are probably involved.

02:46:49.813 --> 02:46:56.173
And here, to the degree we can separate those two, it seems to be immunologic dysregulation.

02:46:56.553 --> 02:46:59.953
And here's something else. And it seemed like there could be a therapeutic intervention,

02:47:00.233 --> 02:47:03.393
even if not in a clinical trial, aimed on each of those.

02:47:04.273 --> 02:47:07.653
Is that being done? And if so, what are the successes of this kind of personalized approach?

02:47:08.153 --> 02:47:12.253
This is what gives me hope is that our understanding of the mechanisms of long

02:47:12.253 --> 02:47:14.193
COVID has actually improved over time.

02:47:14.433 --> 02:47:16.373
And we know that there's, you know, got dysbiosis.

02:47:16.693 --> 02:47:18.453
We know that there are micro- Let me stop you, though, because,

02:47:18.473 --> 02:47:20.593
again, I got limited time and he's now the chairman.

02:47:23.173 --> 02:47:25.593
But we've had some of this information for a couple of years now.

02:47:26.393 --> 02:47:30.453
And that's time enough for people like, for example, the GI doc who ended up

02:47:30.453 --> 02:47:33.773
giving the patient the probiotics and making a positive improvement.

02:47:34.353 --> 02:47:38.513
So to what degree has this information that we've had for two years been translated

02:47:38.513 --> 02:47:42.533
by clinicians into different approaches, even if it's empiric?

02:47:42.633 --> 02:47:47.213
Very, very poorly. I think the broader sort of provider community don't really

02:47:47.213 --> 02:47:50.893
have a very... Okay, then go back to the long COVID treatment centers,

02:47:51.053 --> 02:47:56.713
because we funded eight or nine of those. And so how are those doing implementing this information?

02:47:58.023 --> 02:48:02.263
So those are currently treating people symptomatically, and some of them may

02:48:02.263 --> 02:48:07.543
be trying different treatments according to different mechanisms.

02:48:07.603 --> 02:48:10.723
But I think really the core issue here is that the only really way,

02:48:10.843 --> 02:48:15.703
the only solid way we know treatment works is by doing RCTs or randomized controlled

02:48:15.703 --> 02:48:16.623
trials. Oh, I get that totally.

02:48:16.823 --> 02:48:20.163
On the other hand, I think as maybe you, Dr. Matlock-Brown, who said we could

02:48:20.163 --> 02:48:25.403
have the real-world experience, sometimes a RCT is stimulated by,

02:48:25.503 --> 02:48:29.643
hey, look at this. In this subset of patients, this really seemed to work. Now let's check it.

02:48:29.763 --> 02:48:32.583
It isn't random by which you come up with a random contract.

02:48:32.623 --> 02:48:36.043
And I think a lot of that anecdotal evidence and also the basic and mechanistic

02:48:36.043 --> 02:48:38.163
evidence is informing the development of clinical trials.

02:48:38.263 --> 02:48:41.723
I think the point, though, is that the number of trials that are now currently

02:48:41.723 --> 02:48:47.143
planned or ongoing is too small and too slow to really yield definitive answers

02:48:47.143 --> 02:48:49.003
in the time that we need them to.

02:48:49.063 --> 02:48:51.643
Dr. Harkin, back to you. you. I've read, sitting here reading,

02:48:51.803 --> 02:48:55.863
and apparently physiotherapy in some cases helps people with pulmonary disease

02:48:55.863 --> 02:48:58.963
because it strengthens the diaphragmatic muscle and they can breathe better.

02:48:59.283 --> 02:49:05.723
But we heard, you know, in some cases exercise actually exacerbates the underlying sentimentology.

02:49:06.183 --> 02:49:11.183
How do you as a pulmonologist figure that out? Or is that an empiric too?

02:49:11.963 --> 02:49:16.123
Well, you have to have a conversation with your patient and you have to really

02:49:16.123 --> 02:49:18.103
understand what their limitations are.

02:49:18.203 --> 02:49:22.483
There are several studies that show that pulmonary rehab do actually help patients,

02:49:22.663 --> 02:49:27.283
certain select patients, with long COVID with better outcomes.

02:49:27.663 --> 02:49:30.943
I think it has to be individualized and multidisciplinary.

02:49:31.543 --> 02:49:35.143
You have people that help you breathe better. You have people that can help

02:49:35.143 --> 02:49:39.543
you do a little bit of activity, whether it's resistive or etc.,

02:49:39.543 --> 02:49:41.343
depending on what you can do at baseline.

02:49:41.543 --> 02:49:45.523
You can't just have a one prescription fits all all patients with homecoming.

02:49:45.723 --> 02:49:48.283
Yeah, so how do you differentiate that is my question. Now, how do you come

02:49:48.283 --> 02:49:52.123
up with a person for whom gentle exercise will gradually strengthen and gentle

02:49:52.123 --> 02:49:54.243
exercise will otherwise further exhaust?

02:49:55.467 --> 02:50:01.127
Well, that is the difficult part, but it's really in trying to get a history from my patient.

02:50:01.427 --> 02:50:03.587
What can they physically do day to day?

02:50:05.047 --> 02:50:08.467
Are they getting better? Is this improving over time?

02:50:08.587 --> 02:50:12.047
Maybe they are a person that could do this pulmonary rehab, but someone that

02:50:12.047 --> 02:50:16.467
can't get out of bed because of severe

02:50:16.467 --> 02:50:19.467
post-exertional malaise because of something they did the day before,

02:50:19.667 --> 02:50:23.207
that's someone I'm not going to send to general pulmonary rehab.

02:50:23.307 --> 02:50:25.307
I'm way out of time. Let me just say one more thing. Ms.

02:50:25.427 --> 02:50:30.027
Beal, when she spoke, spoke of wishing to speak directly to her provider and

02:50:30.027 --> 02:50:33.247
having that kind of therapeutic relationship of being able to look someone in

02:50:33.247 --> 02:50:37.767
the eyes, not through a Zoom screen, but, and I've been there too.

02:50:38.027 --> 02:50:42.367
And I just thank you all for being those who provide that face-to-face. With that, I yield.

02:50:47.107 --> 02:50:51.247
Isn't it spectacular to have doctors in the United States Center who actually

02:50:51.247 --> 02:50:55.507
know what they're doing and put in the time and the effort to to make that observation.

02:50:59.487 --> 02:51:02.727
I want to have, I just have one more question.

02:51:03.820 --> 02:51:09.920
When I was young and just learning, a friend talked me into helping him start

02:51:09.920 --> 02:51:13.160
a community health center in Connecticut back in 1972.

02:51:13.700 --> 02:51:15.660
So we just celebrated 50 years ago.

02:51:16.220 --> 02:51:20.760
And way back then, the vision of community health centers, and several of you

02:51:20.760 --> 02:51:24.120
touched on this, really was interconnectivity.

02:51:24.440 --> 02:51:29.180
And we've come back to that again and again and again, the importance of interconnectivity.

02:51:29.180 --> 02:51:32.800
And now we've got to go well beyond networks of community health centers. But.

02:51:34.900 --> 02:51:39.000
Into larger, all-inclusive domains.

02:51:39.700 --> 02:51:43.460
And I want to talk a little bit about the research and the interconnectivity.

02:51:43.580 --> 02:51:48.340
Dr. Walker, the University of Colorado, like Emory, is one of the nine centers

02:51:48.340 --> 02:51:53.280
doing this research on long COVID, the award grant funding.

02:51:53.560 --> 02:51:58.180
How do you think it's best going to pull all that information together between

02:51:58.180 --> 02:52:06.420
the nine different, different, we say foci, the focuses, nine different campuses.

02:52:07.260 --> 02:52:10.600
Yeah, we actually had our kickoff meeting yesterday and it's going on today

02:52:10.600 --> 02:52:13.680
as well. And so it was very interesting to hear the approaches everybody's taking.

02:52:13.860 --> 02:52:20.040
I think what was tasked to us in the grant announcement was a pretty clear delineation

02:52:20.040 --> 02:52:23.400
of what was needed for long COVID care and we all agreed with it.

02:52:23.460 --> 02:52:26.760
So our approaches are actually quite harmonized. There's a fair amount of unity

02:52:26.760 --> 02:52:29.120
in how we're We're going to approach multidisciplinary care,

02:52:29.320 --> 02:52:34.240
addressing health disparities, how we're going to ensure that we're including

02:52:34.240 --> 02:52:36.220
the patient voice and community engagement.

02:52:36.500 --> 02:52:39.680
And so I think that these meetings will really be able to harmonize that.

02:52:39.740 --> 02:52:43.620
We want to collect similar information for our programmatic evaluation so that

02:52:43.620 --> 02:52:48.020
we are able to ensure that we're improving the quality of care in a way,

02:52:48.040 --> 02:52:53.100
again, that's harmonized so that we can lead policy change on health care for long COVID.

02:52:53.960 --> 02:52:57.820
Right. Does anybody else want to add anything to that in terms of how we take

02:52:57.820 --> 02:53:01.980
these efforts around research that are regional and coalesce them?

02:53:03.200 --> 02:53:07.780
I think this really needs a quarterback. You really cannot play a game and play

02:53:07.780 --> 02:53:09.100
it well without a quarterback.

02:53:09.480 --> 02:53:14.640
And this is when we talk about an institute that can bind or sort of integrate

02:53:14.640 --> 02:53:17.320
all of this together to really help us move the ball forward.

02:53:17.440 --> 02:53:18.640
This is what this is about. out.

02:53:18.800 --> 02:53:22.300
You know, you can have a lot of things, you know, going on, but unless you have

02:53:22.300 --> 02:53:27.120
really a coordinated approach, you're unlikely to move the ball really fast and really forward.

02:53:28.793 --> 02:53:33.353
Dr. Harkins, Dr. Madeline Brown. I would just say that there needs to be more

02:53:33.353 --> 02:53:38.793
sort of, I think, engagement of the kind of boots on the ground research that

02:53:38.793 --> 02:53:41.953
you talked about in your initial testimony of,

02:53:42.153 --> 02:53:45.693
you know, the people doing a lot of the work, being able to direct the research more.

02:53:45.813 --> 02:53:50.913
I think better engagement also with patient advocates, many of whom are scientifically

02:53:50.913 --> 02:53:53.713
trained. And so they're bringing both of those knowledge bases.

02:53:53.873 --> 02:53:56.853
I'm thinking of the patient-led research collaborative. collaborative,

02:53:56.933 --> 02:54:05.373
and I think also maybe having some meetings a few times a year where those of

02:54:05.373 --> 02:54:07.953
us who are working on the different arms are actually getting together and talk.

02:54:08.093 --> 02:54:11.133
This is the first time I'm talking to the other three panelists,

02:54:11.253 --> 02:54:15.593
and so I think we need to be more kind of aware of what we're doing and figuring

02:54:15.593 --> 02:54:17.233
the direction out together.

02:54:18.313 --> 02:54:22.173
I agree. It has to be bi-directional. We have to learn from our patients,

02:54:22.373 --> 02:54:29.393
our communities, and also the providers in a variety of research settings and clinical settings.

02:54:29.593 --> 02:54:36.933
But I think moving forward, having more open engagement and data transfer and

02:54:36.933 --> 02:54:42.673
being very transparent with the public as well as with the researchers as to

02:54:42.673 --> 02:54:44.373
what's going on and how can we move forward.

02:54:44.733 --> 02:54:49.033
Right. I think you all demonstrated that. I mean, we're going to make progress

02:54:49.033 --> 02:54:56.773
on this by taking your individual curiosity and all your coworkers on this and then careful,

02:54:56.953 --> 02:54:58.713
careful observation and then

02:54:58.713 --> 02:55:01.833
figuring out how to take that and assimilate it from different groups.

02:55:01.833 --> 02:55:08.113
Oops, again, I can't tell you how impressed I am that every one of you are talking

02:55:08.113 --> 02:55:11.873
about the importance of talking to patients and just getting more and more and

02:55:11.873 --> 02:55:16.353
more patient-based in terms of determining what the reality is,

02:55:16.433 --> 02:55:18.433
but then also what the next step should be.

02:55:19.521 --> 02:55:22.461
Uh, we're a little over time, so I'm going to cut it off here.

02:55:22.501 --> 02:55:26.381
I would stay here, you know, I should take you all out and buy you lunch if

02:55:26.381 --> 02:55:27.761
they didn't have me going to another meeting.

02:55:28.021 --> 02:55:34.781
Um, but it really appreciate, cannot overemphasize, uh, how much I respect your

02:55:34.781 --> 02:55:40.221
service and your willingness in such a complex, difficult, challenging circumstance

02:55:40.221 --> 02:55:41.861
where people's lives are on the line.

02:55:42.501 --> 02:55:45.941
You're at, you're on that line. You're out on the front line doing the hard

02:55:45.941 --> 02:55:49.801
work. So we get to speak on behalf of the country, I think, to a certain extent.

02:55:49.821 --> 02:55:52.041
On behalf of the United States, we thank you.

02:56:00.721 --> 02:56:06.521
So that's the end of our hearing today. Again, can't emphasize how much we appreciate

02:56:06.521 --> 02:56:08.561
the participation of our witnesses.

02:56:08.681 --> 02:56:11.941
Thank you so much for making the time and the effort.

02:56:12.581 --> 02:56:19.101
Any senators who wish to ask additional questions will have questions for the record.

02:56:19.261 --> 02:56:23.681
They'll be due in 10 business days. Those questions due February 1st at 5 o'clock.

02:56:24.661 --> 02:56:29.481
And finally, I'll ask unanimous consent to enter into the record 37 statements

02:56:29.481 --> 02:56:33.121
from stakeholder groups outlining their priorities for addressing long COVID.

02:56:34.861 --> 02:56:42.681
Motion? Aye. Yes. A claim, I guess we call that. Anyway, this committee stands adjourned.