The Senate Committee on Health, Education, Labor, and Pensions will come to order.
Today, in my view, we're going to be talking about an issue that has not gotten
the attention that it deserves from the medical community,
from the media, and certainly from members of Congress, and that is the crisis of long COVID.
And long COVID, as we all know, is the fact that after people get COVID,
sometimes there are symptoms which simply do not disappear.
And we're going to hear from our panelists in a moment about that.
So what I would like to say to our panelists, and by the way,
we have a full house here. We have an overflow room over there.
And I suspect a lot of folks are watching this on TV.
And on live stream. And I think there is the sense that something is going on
in America, which is serious, that we're not addressing.
So I just want to say to our panelists and all those who are dealing with long
COVID, we hear what you're experiencing. We take it seriously.
We think we have not, as a Congress, done anywhere near enough,
and we hope to turn that around.
The reality, as we're going to hear from our panelists in a moment,
is that long COVID is a very serious illness that can have devastating consequences
for those who contract it.
In America today, the estimate is that some 16 million people throughout our
country have long COVID.
It affects people of all ages and all backgrounds, although we're going to hear
a little bit of evidence that it disproportionately impacts people of color
and lower income people.
For too many, far too many people who were previously healthy,
and we're going to hear from a former athlete this morning, who are leading
active and productive lives,
they have suddenly found themselves bedridden and grappling with strange, debilitating systems,
that they could not conceive of having gotten as a result of long COVID.
And the truth of the matter is, and we'll hear from our experts after we hear
from the patients, that we still don't know why. We don't know the cause of the disease.
But this is what we do know. We know that long COVID can include more than 200 symptoms,
including serious cognitive impairment and severe cardiovascular and neurological
problems that can continue for weeks, months, or even years after initial infection. infection.
We know that people with long COVID have experienced a wide variety of chronic
symptoms, including extreme fatigue, insomnia, migraines, brain fog,
dizziness, shortness of breath, loss of smell or taste.
And sometimes those diseases can be so debilitating that it leads literally to suicide.
This case in my own state where a young man, previously healthy,
he committed suicide as a result of illness. So let us be clear.
The symptoms of long COVID are not minor inconveniences.
They are debilitating conditions that affect the ability of people to work,
to care for their families, and to live full lives.
And here is what far too many do not know.
Long COVID, and we're going to hear more about this this morning,
can affect anybody anybody who has had COVID-19, from those who experienced
mild symptoms to those who were severely ill.
Further, although you may not have long COVID after your first infection,
each reinfection can increase the risk of developing it.
In other words, if you're under the impression that once you've gotten COVID,
you don't need to worry about it ever again, you are mistaken.
This is an escalating danger, particularly for those who have suffered repeated infections.
It poses a severe threat to public health, and it demands our immediate and
focused attention. Now, let's be clear.
The impact of long COVID is not just a health issue. It is an economic one as well.
It is estimated that as many as 4 million Americans are out of work due to long COVID.
The annual cost of those lost wages alone is around $170 billion a year.
So, what should we do about it? First, we must educate medical professionals
on how to adequately diagnose long COVID, better understand the risks associated
with it, and identify potential therapeutic options.
Far too many patients, and I think we're going to hear a lot about this this
morning, with long COVID have struggled to get their symptoms taken seriously.
And far too many medical professionals have either dismissed or misdiagnosed
their serious health problems.
This crisis is made even worse by the fact that long COVID patients often require
multiple specialists to treat their complex symptoms.
The existing shortage of health care providers, from primary care to mental
health providers, means that far too many Americans are unable to access affordable,
high-quality care when they need it.
That's another issue that some of us hope we can address in the near future.
So let me just conclude by thanking our panelists, both the patients and the
experts who we will be hearing from in a moment.
And let me give the mic over to Senator Cassidy. Thank you, Chair Sanders.
I'm a doctor, and I worked for a long time with people who had chronic fatigue
syndrome or other things which were just difficult to put your finger on. this is my problem.
And the frustration they had
with real symptoms, but without real test findings was just remarkable.
And so when I hear of long COVID, you have not my sympathy, my empathy,
my understanding that this is something which can be devastating for someone.
They feel like there's something out of their control dictating their life.
And so I thank you for being here. I thank you for sharing your story.
And for the researchers, I thank you for doing that research.
Some of what I say will just be an echo of that which Senator Sanders says,
because the facts are the facts.
Most folks with COVID recover, but there is this subset which does not.
And again, thank you for representing them.
And we know that long COVID sometimes ends. That's the hope there,
that there is not necessarily perpetual long COVID, COVID, but for some, it is.
And again, that is a challenge that we have before us. So let's get the research better.
Let's do what we can so that those who have it, somehow it does end.
By the way, my own kind of episode of it is that after having COVID,
I could really smell ammonia.
And I'd walk into a hospital where they were using it to clean a place,
and whoa, it just powered me.
I hope you don't mind me saying this, but when my dog urinated,
I could really smell that urine. It was just something that was just so acute.
But fortunately, that has kind of waned away, and now it's much less than it used to be.
But it still comes back as just a reminder, and that reminder tells me of that
which you, you who have these symptoms more severely, just how you might experience that.
So what are we doing? Well, Congress, I'm glad to say, has put significant funding towards this.
We gave the Department of Health and Human Services a billion dollars to study
long COVID. And last summer...
This committee included a policy that would give further direction to HHS's
long COVID research as part of the Pandemic and All Hazards Preparedness Act,
which we call PAPA, the reauthorization.
Now, we know, we're about to hear, NIH has received criticism about the effectiveness
of their long COVID research program.
The Researching COVID to Enhance Recovery are the recover initiative.
Initiative, and that's why Congress needs to reauthorize PAPA.
That gives us the ability to give not just money, but oversight as to how these
programs are being conducted.
Today, we're going to hear from some of our non-federal partners working on
RECOVER and other HHS-funded projects to better understand how that work is
going, what opportunities are there, what else can Congress do.
And we're also going to hear from patients and from the mother of a patient
as regards about your long COVID experience and allowing that to illuminate
the conversations that we'll be having.
I thank you for being here. I thank the committee for examining it.
And, Mr. Chairman, I yield back.
Thank you, Senator Cassidy. I don't have twice that. Okay. Fairer long COVID, a national emergency.
All right. And a virus now. all right
is Ms.
Angela Vasquez from Los Angeles.
Ms. Vasquez is an individual with Long COVID and the policy director for the
Children's Partnership, a nonprofit organization that advocates for children's health equity.
She has advocated for the Long COVID patient community since early in the pandemic.
Ms. Vasquez, thanks very much for being with us.
Thank you, Chairman Sanders, Ranking Member Cassidy, and members of the committee
for having me here today.
My name is Angela Mediquez-Vasquez, and today I'm here to speak as a disabled
former athlete, long COVID patient, and former president of BodyPolitik,
a grassroots patient-led health
justice organization that was at the forefront of long COVID advocacy.
Before we had to close due to a lack of funding, we connected and supported
over 15,000 long COVID patients worldwide, the vast majority of whom were from the U.S.
Before getting COVID-19 in
Los Angeles in March 2020, I was a healthy runner for nearly two decades.
What started as a mild illness progressed over weeks with an increasingly scary
set of symptoms, including severe levels of blood clots, a series of mini strokes,
extreme confusion and numbness in my face, hands, and legs that progressed to
an inability to walk for several days, and new onset allergic anaphylaxis after after every meal.
I had many clinical signs that something was wrong within weeks.
High markers for an autoimmune disease, labs that showed my blood was severely
clotted, markers of an over-activated and exhausted immune system.
All were dismissed by doctors as anxiety, but now are being verified by the
decades-long overdue research as clear evidence of infection-related pathology.
I was left to fend for myself from bed that first year because I did not fit
the profile of who was considered high risk.
There wasn't even acknowledgement that infections could trigger chronic disease,
something I knew when I first got sick, since I have a friend who has lived
with chronic Lyme for years.
I was a young person of color, not elderly and white.
Now, even the CDC's data shows that Latina and LGBTQ plus communities are currently
experiencing the highest levels of long COVID in the U.S.,
and there is strong evidence that people of color are not prescribed antivirals
like Paxlovid at the same rate as white people.
The medical neglect and discrimination I face contributed to my current level
of disability and continues to harm patients like me.
With long COVID, I have several chronic diseases, including myalgic encephalomyelitis,
also known as chronic fatigue syndrome, or ME-CFS.
It's a neuroimmune condition whose hallmark symptom is post-exertion symptom
exacerbation or post-exertion malaise, which means when I push myself past a dynamic threshold.
I will experience a relapse of my worst symptoms like insomnia,
brain fog and confusion, sleep apnea, heart palpitations, fevers, and severe migraines.
I'm on 12 different prescription medications, including weekly IV treatments at the hospital.
I have a strict pacing regimen that allows me to work from home but not do much else.
I don't socialize, I don't enjoy my old hobbies, and I don't really leave my
home, especially now that I'm considered high risk.
I'm actually on the mild end of disability and now have access to a lot of medical support.
Patients who have had ME-CFS for decades guided me to the right specialists
who are familiar with infection-triggered diseases like dysautonomia,
mast cell activation syndrome, and ME-CFS and how to manage them.
My employer has been supportive in accommodating my needs, like frequent breaks
and working from home where I can work while laying down.
Low-income and patients of color who are more likely to get COVID-19,
long COVID, and have the least access to health care, are likely experiencing
the greatest levels of disability and medical neglect, and largely remain unidentified
or unsupported with their new disabilities by the health care system,
employers, and schools.
Having insurance doesn't necessarily guarantee access to care.
Long COVID patients with managed care plans especially are at the mercy of overwhelmed
primary care doctors unfamiliar with infection-triggered sequelae who gatekeep
access to specialists who can diagnose and manage the known pathologies.
I recently had to assist a colleague, a health access lawyer,
navigate her own HMO to get her son a long COVID dysautonomia diagnosis after
two years of constant symptoms.
There's also an escalating health access crisis with the return of Medicaid
eligibility redetermination this year.
Having to prove that you are still poor is a time-consuming,
stressful, and bureaucratic process that contributes to millions of otherwise
eligible people losing their health insurance because of application errors or misnotifications.
Hundreds of thousands of disabled long COVID patients are new Medicaid recipients
who may have moved or due to their financial or employment changes,
or they may simply be too ill to understand and fill out the forms as I have been during relapse.
My insurance keeps me stable enough
to work and I need to work to keep my insurance, a horrible double bind.
We are living through the largest mass disabling event in modern history.
Not since the emergence of AIDS has there been such an imperative for large-scale
change in health care, public health, and inequitable structures that bring
exceptional risks of illness, suffering, disability, and mortality.
COVID-19 is but the most recent driver of a known phenomenon of post-viral illnesses
that cluster around a set of understudied, complex chronic diseases and are
compounded for marginalized communities by social drivers of health.
With enough political will, we can fund a long COVID moonshot that transforms
clinical and community care for all of us. Thank you.
Ms. Vasquez, thank you very much. Our next witness will be Mrs.
Rachel Beal, and she will be recognized by Senator Kaine of Virginia.
Thank you, Mr. Chair, and I so appreciate this hearing. And I'll actually introduce
both Ms. Beal and Ms. Heim, both from Virginia. Virginia.
The next witness will be Rachel Beal from Southampton County,
Virginia, in the southeastern part of our state.
Rachel was previously the Director of Human Relations at the Paul D.
Camp Community College.
She's a wife and mother to three children. Her husband, Steve, is here with her.
Last year, she joined me at a Long COVID Summit that I hosted in Richmond, Virginia.
The summit brought together patients and providers to discuss ways to improve patient centered care.
Rachel's been living with long COVID for almost three years,
and her story is one that's very focused upon the tremendous challenges of maintaining
work with long COVID and also the tremendous challenges of negotiating the social
security disability insurance system with long COVID.
And so after Ms. Beal testifies, the next witness will be Nicole Heim from Winchester, Virginia.
Nicole is the mother of three children and is here on behalf of her 16-year-old
daughter who has long COVID.
And Nicole will share with us her journey navigating the healthcare system and
the education system as the parent of a child with long COVID,
one that is so significantly challenging that it even required the family to
move in order to be able to get the healthcare that their daughter needs.
And so with that, Ms. Beal, Please, we're glad to have you. We're now open for
your testimony, and Ms. Heim, you can follow.
Chairman Sanders, Ranking Member Cassidy, and members of the committee,
thank you for inviting me here to testify. It's an honor to be here.
My name is Rachel Beal, and I live in Sedley, a small town in southeastern Virginia.
I live with my husband, Stephen, who's here with me today, and my daughter and two sons.
I tested positive for COVID on March 17th, 2021.
I was sick with COVID for two weeks. I had a high fever and intense body aches.
Although I didn't feel well, I managed my COVID at home.
After the fever went away, I tried to return to my normal life.
I worked as a human resources director at our local community college.
I loved my job, but soon realized I was struggling.
Even after my initial COVID infection, I continued to experience extreme fatigue,
chronic pain, and neurological issues, to name a few.
Before COVID, I was very healthy. I didn't expect to have problems recovering.
When I realized I was struggling, I visited my primary care doctor.
My doctor told me I needed more time to recover. I was stunned when he took
me out of work for two weeks.
I was very stressed about missing more work and worried that I would fall fall
behind, but two weeks turned into two more weeks, and eventually my doctor diagnosed
me with long COVID in May 2021.
I was lucky to have a primary care doctor that believed me and believed my symptoms.
I know not every person with long COVID has that same experience.
My long COVID symptoms persisted beyond May 2021.
I tried to go back to work part-time, but I just couldn't do it.
For the first six months of my illness, I was on short-term disability.
I tried over and over to work, but I could only manage an hour before I would
start getting headaches and feel sick.
Six months after I was diagnosed with COVID, I was transitioned to long-term
disability, and at this point I was separated from my job.
As someone who's helped countless employees on short-term disability and has
transitioned some to long-term disability, I knew this would happen to me.
I used to have the very same meetings with employees, but there is nothing that
prepares you to hear the words that you no longer have a job.
I loved my position at the college. I loved my career in human resources.
Having to stop working because of my health has been devastating.
I had a very full life before I got sick. Long COVID has affected every part of my life now.
I wake up every day feeling tired, nauseous, and dizzy.
I immediately start planning when I can lay down again.
There are many days when I sleep all day, and on my good days,
I get two to three hours of energy.
I've had most of the symptoms of long COVID.
The fatigue and chronic pain are the hardest to manage. It can be debilitating.
I also have neurological issues.
The executive function part of my brain seems to be affected the most.
Being sick for so long has made my depression and anxiety worse.
I've had low times, and when I don't feel good, I get depressed.
I was just diagnosed with fibromyalgia, triggered by long COVID,
yet another illness for which there's no cure.
In December 2021, I filed my initial application for Social Security Disability Insurance.
I've been denied twice. I'm now waiting for a hearing date with an administrative law judge.
Long COVID is recognized by the Americans with Disabilities Act.
It should be easier for someone with Long COVID to be approved for SSDI.
I'm very fortunate that I have a supportive family. family.
My husband has good health insurance. My doctors, procedures,
most of my therapy is covered and I'm thankful for that.
However, the co-pays add up and sometimes we can't pay them on time.
My kids have grown accustomed to me being sick. We plan things around how I
feel and my energy level.
If there's something coming up like a birthday or holiday, I try to get as much
rest as I can before the event.
I know that I will have a crash for the next few days after,
and I won't be able to do much but sleep.
Sometimes it takes several weeks for me to get back to my baseline.
For example, coming to testify today has been a huge effort,
and I know that I will need several days to recover.
We've gotten used to this lifestyle and living within my physical limitations.
When I think about what comes next, I just don't know. Full recovery seems out of reach for me.
I've been sick for almost three years, and it feels like there hasn't been much
progress in long COVID research.
I hope that Congress can help with that to move the research forward.
But for now, I'm trying to make peace with my situation.
It makes me sad to think about my future. This may be as healthy as I get.
Ms. Haim.
Chairman Sanders, Ranking Member Cassidy, members of the committee,
thank you for the invitation to testify today on this important issue.
My name is Nicole Haim, and my 16-year-old daughter has long COVID.
In this room alone, I am sure there are countless stories about the impact of
long COVID, but one story that is rarely shared is that of our children and
the devastating physical and mental long-term effects it has. has.
My daughter is just one example, and I am here to share her story in the hopes
that it may help other families.
In September 2021, my daughter, 14 years old at the time, contracted COVID.
Before COVID, she was a relatively healthy, typical teenage girl,
excelling at school with a robust social life.
A month following her recovery, I received a panicked phone call from the school
nurse saying my child was short of breath, her pulse was extremely high,
and her arms and legs were locked in place.
This is the kind of phone call no parent ever wants to receive.
After seeing she was hypoxic, low blood oxygen, at the local ER,
they transferred her via ambulance three hours away to a larger hospital,
where she was admitted and received a long COVID diagnosis.
Following this diagnosis, we were fortunate to be introduced to and get into
the long COVID clinic at Children's National Hospital here in Washington, D.C.
After a few months of waiting and jumping through prior authorization hoops
with Medicaid, we were able to begin seeing Dr.
Alexandra Yontz, the lead infectious disease doctor at Children's who coordinates
the team, which includes multiple specialists.
At the time of our initial visit with them, my daughter was experiencing a wide
range of symptoms, including extreme fatigue,
low blood pressure, increased heart rate, severe joint pain,
daily nausea and vomiting, severe brain fog, depression, and more.
We learned about and enrolled in the Joint Children's National and NIH Pediatric
COVID Outcomes Study led by Dr.
Roberta DiBiase. This is the only study of its kind in the country where a thousand
children are evaluated for three years following enrollment to determine long-term
effects on children with COVID infection.
Long COVID stripped away my daughter's life as she knew it.
She was a straight-A honors student, an active member of the school's marching
band and had an active friend group.
Now she is isolated and struggles to do her schoolwork.
Because of the severity of her symptoms, she is no longer able to physically
participate in the marching band or go to school.
Instead of looking forward to a high school graduation, my 16-year-old is working
slowly on her GED from home.
The mild depression and anxiety she struggled with prior to COVID has only been
intensified and has led to increased panic attacks and hospitalization for suicidal ideations.
We so frequently hear about the physical effects of long COVID.
Unfortunately, we rarely discuss the mental health impact it has.
It is especially concerning when considering our children.
Having a chronic illness as an adult is difficult, but it is more challenging
and takes a greater toll, a much greater toll on a child.
So much of our children's lives revolve around school, extracurricular activities,
sports, and friends, activities that continue for my daughter's peers, but not for her.
After two years of treatment, my daughter has seen some symptom improvement.
However, we are still experiencing symptoms and struggling each day to adjust to this new norm.
We are learning more and more every day. In fact, we recently discovered she
has micro blood clots, which will require her to be on daily blood thinners.
We are optimistic that she will fully recover one day, but we remain concerned
that her current treatment regimen may be necessary for the rest of her life.
Clinics and studies like those done at Children's are crucial to understanding
this infection and its unique impact on our children.
I feel so grateful for the treatment my daughter is receiving at Children's,
but I know there are many other parents and children struggling not only with
the long COVID diagnosis, but also to find symptom relief.
In reflecting on our experience, my recommendations to this committee are simple. bomb,
Create medical screening tools to help identify long COVID.
Increase awareness around pediatric long COVID.
Allow physicians caring for long COVID patients to have telemedicine appointments
in states they are not licensed in for both the initial visits and for follow-up.
Encourage the committee to meet with the hospitals that are running the long
COVID clinics to understand the level of services that they provide.
I would tell any parent that if their child's existing conditions worsen or
they develop persistent and or new symptoms after COVID, they should contact
their doctor to discuss long COVID.
I look forward to a day when doctors not only know more about long COVID,
but can also quickly identify patients to provide timely treatment.
I hope studies like these at Children's National Hospital are continually supported
to lead new treatment options for patients like my daughter.
I'd like to offer myself as a resource to this committee and our healthcare
system as we continue to address long COVID.
Thank you for the opportunity to share our story. I look forward to our discussion.
Well, I think I speak for the whole committee in thanking all three of you for
being here and for educating us and the American people about what you and,
in your case, your child has experienced.
Let me begin my questioning with Ms. Vasquez. Um...
And I know you have experience, obviously, not only with yourself,
but you have interacted with many, many hundreds of people with long COVID.
Is one of the frustrations that the medical community or others do not believe,
in fact, what you are experiencing?
Is that one of the problems that you're going through?
Yes, absolutely. Absolutely. I daily, it seems like, hear from patients who
have been experiencing long COVID symptoms,
you know, symptoms that are clearly as a result of their infection with COVID
being dismissed by doctors as anxiety, as pandemic stress.
And it's, I think,
quite alarming that That even with the media attention that it has gotten and
then all of the grassroots advocacy that we've done to educate,
you know, providers and the community about long COVID, it is not enough. enough.
There really needs to be, I think, a stronger,
louder government campaign around long COVID for public health and as well as
clinical education to providers, particularly primary care.
I mean, you said yourself that primary care is overwhelmed.
It's really, really difficult to assess a patient in 15 minutes and get them
everything they need. Let me jump to Ms.
Beale and Ms. Helm just to pick up where Ms. Vasquez left off.
How has your, what kind of impact, what kind of effect have you had in terms
of reaching out to the medical community?
Have you found a doctor's understanding of the problem?
Have you been able to get the help you need, Ms. Beal, for your symptoms or
others in a similar place?
Thank you so much for your question, Senator.
Early on in my long COVID journey, it was difficult to find a doctor that knew what long COVID was.
And I even had a doctor tell me that she didn't believe that long COVID was real.
And that's hard when you know you're sick and you know it's real,
and you have a medical professional telling you that they don't believe it.
It's hard to get anything out of a conversation like that.
I've become more selective in which which physicians I see, I ask every single
one of them, have you heard of long COVID?
Are you treating any other patients with long COVID?
And I think in the last year, more of the providers are more aware of long COVID,
so that's been very helpful.
Ms. Helm, you've introduced us to something I think that's even less attention
than the overall crisis of long COVID, and that is how it impacts young people.
Um i i guess you have not by
choice become somewhat of an expert on covid and
young people can you tell us a little bit about what you have learned as to
how many kids are experiencing long covid whether they're getting the kind of
treatment that they need how it impacts you know a teenager's life speak it to the mic there please.
Just being on social media and connecting with all these different groups of
parents, a lot of times you get to talk directly with other parents and hear their stories.
And there's a lot of parents that are struggling to get treatment for their children.
I mean, they're trying all kinds of different, you know, medications,
supplements, even hyperbaric chambers.
I mean, they're doing anything to try and help their children feel better.
And I think the biggest thing in relation to the question about the doctors
I come across, The doctors I've been around are not dismissive.
They just say, I don't know.
I hear that a lot from doctors. I don't know. I don't know. I don't know.
So what I do is because I've got the information from the clinic and the study
and stuff, I tell them what I know.
I was at the gastroenterologist yesterday and I said, did you know COVID lives
in your gut for months after infection?
And she said, no, I didn't know that. And I said, well, tell everybody it's your office.
And then she looked at me and she said, Yeah, well, she looked at me and she
said, well, how do I do that test?
I don't even know how to order that test to see if they have COVID in their school.
And so I think that's part of the problem is the doctors need the information
so that they can help the patients.
Because they just don't know that COVID is doing this to people, I don't think.
They're shocked usually when I tell them the stuff that I've learned.
All right, I'm running out of time. My last question is, what good question did I not ask any of you?
All right, Donna.
Uh, we, uh...
We know this stuff backwards and forwards, not only because we live it,
but so many of us have had to do our own research.
I am heavily invested in PubMed and Google Scholar. I can read a paper.
I send papers to my providers.
We are experts from a lived experience and because some of us are getting in
there and doing the research ourselves.
So that's why it's important to include us.
See that i knew i would ask a brilliant question that was you senator custody
i defer to senator dr roger marshall well well thank you chairman and ranking
member again and this is personal for me,
um one of my loved ones is one of those 16 million people that suffered from long covid,
incapacitated for some two years uh people often ask me well what is what's
long covid And I think that we have some loose definitions, but I tell people
it's like if you had mono that never goes away.
There's a brain fog. There's aches and pains. And sometimes the pains follow
nerve tracts, the vagus nerve and the femoral nerve.
And maybe it's a venous process and there's micro blood clots.
Like you, we've taken my loved one to dozens of doctors.
I've talked to 40, 50, 60, 80. I've read everything there is to read about long COVID.
Talk to other members of the Senate that have had long COVID. What are they doing?
So I share your frustration. I am frustrated that our CDC seems to be more focused
on, I guess, vaccines than they are treatment for long COVID.
I mean, simple questions still have not been answered. If you take Paxil a bit
early on, even though you're young and healthy, does it help decrease the incidence of long COVID?
I don't think we know the answer to that. Do vaccines increase or decrease the
incidence of long COVID? If you've already had COVID.
Does the vaccine increase or decrease your risk of long COVID?
You know, we don't know the answers.
So I couldn't be more frustrated that it's vaccines, vaccines,
vaccines, rather than focused on diagnosis and treatment. I don't need epidemiology anymore.
I need diagnosis and treatment.
What blood tests should we be ordering? What is the standard of care when a person has long COVID?
What blood work should we be ordering?
Now, I'm going to give you some hope, though.
I think in the past month, I finally have talked to a couple physicians that
get it, that understand it.
Dr. Bob Redfield from the former CDC is one of those people that has dedicated
his life now to figure out what's causing long COVID.
I think they're getting closer, but I couldn't be more disappointed in what
is coming out of the CDC right now, that they're not cooperating adequately
enough with private doctors.
Trust me, these doctors, we want to help. help
we want to help you but we don't know we don't
we don't have a cure for mono we don't have cures for the flu so i'm
frustrated and mr chairman what i'm really concerned
about is more recent news coming from across
the from foreign lands that just recently
learned that uh dr lily ran two weeks before we knew what covid was over here
a sequence that our own nih that she had submitted the DNA sequence for COVID
to our own NIH on December 28th, but the NIH deleted it.
That would have given us two more weeks to work towards a vaccine and curing
and preventing the problem.
And then I find out she was on the eco-health grant from NIH,
our own American dollar. She's working for the American government.
She has the sequence. She gives it to us, and we delete it.
Remember, it only took two days for Moderna to develop a vaccine.
If we would have had the vaccine earlier, my point is how many long COVIDs would
we have prevented if we knew that this was person-to-person transmission,
which the Chinese certainly did by then.
If we would have known this was person-to-person transmission,
that this came from a laboratory, that it was a superbug, maybe we could have
prevented some of these 16 million people. people.
It points out that we don't have a good grasp of our grants.
So we award these grants, people are doing research, and we don't have a good
grasp of what they're doing.
And I'm even more concerned recently, again, coming out of China,
that their viral gain of function continues.
This week they found they've made a COVID virus that attacks the brain more
so than human lung cells and human veins.
That's why we've called for a viral gain of function moratorium until we can
wrap our arms around this horrible situation.
Who here can say the benefits of the virus that looks like COVID that attacks
the brain more over any other cells?
What are the benefits of that type of research? People just can't show me what the benefits that are.
Well, I guess my question for you all, and I think it goes to the mental health
of my patients, my family members, the people I talk to.
If we knew where COVID came from and what are
we doing to prevent it in this time is your daughter your son i'm sorry that
your daughter you know the her this is definitely a mental health impact on
people as well are you frustrated with the cdc that we don't have better research
out there diagnosis treatment are you frustrated that we're not doing more to
stop this next round of covid from coming.
I just want them to do something about it now going forward and to acknowledge
that it's real and how it's affecting the children.
I get it. Thank you. Thank you so much, everybody. Senator Murray.
Well, thank you very much, Chair Sanders. I'm really glad we're having this
really important hearing, and I want to thank all of our witnesses for being here today.
You know, since the COVID-19 pandemic, I have really been pressing for more
NIH funding to help us better better understand and treat long COVID.
And I continue to fight for strong funding bills for health research and public
health infrastructure as we are now negotiating our current funding bills.
Last Congress, I fought very hard to pass my Prevent Pandemics Act to make sure
that we would not be caught so unprepared for whatever the next pandemic hits.
But there is a lot more that we need to do. As all of you well know,
we need better information.
We need better care. We we need better treatment, we need better public awareness
to help with prevention.
And I know for patients dealing with this, long COVID is a serious life-altering
condition, and one we are, as many of you just said, learning about every single day.
So I really appreciate all of you being here and sharing your stories.
You know, throughout the COVID-19 pandemic, we know that women were likely to
be exposed to COVID-19 frontline essential workers, our daycare workers,
our nurses, and many of them living in underserved communities.
Now, I believe in general that our country needs to take women's health more seriously.
So I think this question I have for you is extremely important.
Given the barriers women already face in getting quality care,
What are some of the unique challenges you all may have seen as women seeking
care and treatment for long COVID complications?
And Ms. Vasquez, I'll start with you.
Yes, I absolutely believe my gender and my ethnicity played a role in not being
able to get care, especially at the beginning of the pandemic when hospitals
were absolutely rationing care, even if it wasn't an official policy.
I was told multiple times that unless I was elderly and in need of a ventilator,
that I needed to go home and save beds for people who were really sick.
And this was after getting labs showing that I was severely blood clotted.
I was told that that was a false positive and that I didn't actually need any
care. I was sent home as a psych patient.
And that continues to happen to women, especially women of color,
Black women especially.
And I kept going back to the emergency room because I told myself,
I am not going to be a statistic.
And I think, unfortunately, those statistics are growing. Ms. Beal?
Thank you for your question, Senator. For me, early on, I did have a doctor
that kept saying that it was just depression and anxiety.
That's why I was achy. That's why I was tired. It's just depression.
It's just anxiety. Go see a therapist. Let's work on it from that angle.
And that's very discouraging as a woman or any patient that it's all in my head.
I know it's not all in my head.
But this doctor is trying to make me feel like it's all in my head.
And it's very discouraging.
You know, there were some instances where I requested some testing and there
was a little bit of pushback on that.
And I think that that was coming into play of, you know, the woman being a woman
and I guess kind of brushing me aside a little bit more.
One of the things I needed was blood work to test my ferritin levels.
And the doctor kept testing just the iron, but it's separate tests.
And I found out that I was anemic. But if I hadn't kept pushing that with him, I wouldn't have come.
I wouldn't have been able to get that conclusion. Miss him.
I don't think that's something I can really speak on for my daughter. Okay.
Well, let me ask you about access because a lot of patients with long COVID
in my state of Washington have told me that they have really limited access
to quality treatment and rehab services.
The University of Washington's post-COVID rehab and recovery clinics is one
of the few that we have in a very large state.
I know you all have lived through the challenge of navigating our health care
system. What do you want to see done at the federal level to expand access to
quality care for long COVID patients?
Any of you? Ms. Vasquez?
Yes. I really feel like we need to broadly disseminate sort of basic diagnostic
and screening tools to, again, primary care physicians.
They are the front line. They're the first person that folks go to after an
infection with these, you know, somewhat nebulous symptoms.
These conditions have existed. We have clinical diagnostic tools to be able
to diagnose and then manage these conditions.
That needs to be disseminated widely. And I think there's also a role to play
through HHS and guidance to state Medicaid agencies to really hold contracted
managed care plans accountable to identifying and treating long COVID adequately.
Okay, very helpful. Either of you want to comment?
I am out of time. I wanted to ask Ms. Heim very quickly.
We know that the education system during COVID, a lot of kids suffered.
We're still dealing with a lot of the significant impact of learning throughout that time.
Your daughter's now, how are you educating her with long COVID?
Is that a challenge still for parents? Yes.
We had transitioned from in-person school to a homebound program, which most states have.
But even that was too much for her to be able to do with the anxiety.
The four core classes, and they had tutors that would meet with them.
But a lot of the teachers weren't cutting her any slack.
They weren't, you know, giving her less work.
They weren't sympathetic at all.
We're dealing with learning loss from COVID in general, And I think we need
to highlight it with long COVID patients as well, especially young kids. So thank you.
Senator Custody? I will defer to Senator Braun. Thank you.
When I look at what we do here on this committee, I think whatever the particular
topic is, we need to weave it always into maybe a little broader discussion.
And when you look at COVID coming along, catching our country by surprise the way it did,
I think a big part of the trickiness of navigating through it was what is true and what isn't.
How much transparency is there?
I know in my own business that I ran that I could only look back on in terms of what they were doing.
We took it seriously. Just like we took health care seriously 15 years ago when
I was sick and tired of a health care system that was telling us how lucky we
were that our premiums are only going up 5 to 10 percent a year.
Along with zero transparency into the system.
I think COVID, you want to find a silver lining to it, shows you how when you
really get into a predicament or it's just laced with uncertainty,
novelty, and then you try to remediate it through a system that you know is
not real good at taking care of the standard operating stuff.
No one should go broke in this country.
Because they get sick or have a bad accident. I think most of us,
thank you. And that should be something we all agree with.
Then it gets down to what are you going to do about it?
So I want to highlight something that the chair of the committee and I are doing.
And then the question will be around that as you navigated through your own
complications with COVID.
To me, when I I wrestled with it 15 years ago. There was zero transparency.
You basically hoped that your insurance plan was going to take care of it.
You never found out the net result until three, four months later when you open
the envelope up with trepidation to see how much it was going to cost you. That's no good.
We've got a bill called healthcare transparency competition,
competition, all the things I've been talking about.
So there are bigger things working here in the U.S. Senate. And thank you,
Chairman, for doing that alongside many of us that are interested in it.
Let's start on the left side of the, down here.
Tell me, once you got into your own predicament fighting COVID,
was it easy dealing with the system itself when you were were trying to see
what your alternatives were.
Could you actually quantify that into how much it was going to cost?
And tell me what that was about.
The costs of living with long COVID are high.
I have an excellent employer-based health plan, a PPO, and I still last year
spent $4,000 out of pocket on medically necessary care.
This was not alternative care or they were things that were not covered that
were denied by my health plan.
And that was for a variety of reasons.
A lot of my medication needs to be compounded because I'm allergic.
Insurance does not cover compound medication easily. I spent hours,
probably a total of 40 hours over a month, just trying to get one medication covered.
So there's a cost, there's a financial cost and a time cost.
Thank you. Ms. Beal. Yes. For me, the same thing with the cost.
So I have, you know, my co-pays that I pay for every specialist I see, and that really adds up.
Also, I live in a small town about an hour away from most of my doctors,
so I'm having to drive everywhere to these appointments.
Appointments when my time would be better spent resting instead of going everywhere
to try to see the doctors. It's very frustrating for me.
You know, with my medical insurance, I have to see my PCP to ask for a referral.
So when I wanted to see a neurologist, I had to ask to go see a neurologist
or cardiologist, hematology, every time I had to have a referral.
And then you have have to wait six months to get seen by the specialist and
all this time is going by and you know what the issue is but you can't get in
front of the right doctor so that's always that's been very frustrating um insurance
when when things aren't covered that you need it's very,
demoralizing because you know you need it and it's out of your um you know not
in your own personal budget to cover it.
One of the things that I need is massage therapy for my chronic pain.
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.
And that's something that helps people with long COVID.
So why can't the insurance cover it?
Good question. Really frustrating. Ms. Haim.
My experience is very different because my daughter's on Medicaid.
So what was going on with us was, well, first off, in order to get into Children's
National, there was a lot of prior authorizations that needed to happen.
I definitely feel for my doctor's office sometimes because of the hours that
they put into getting us into some of these specialists.
But part of the reason why we moved states was because we previously lived in
West Virginia. And whenever I needed to see a specialist, which was a lot,
we had to drive over three hours to go to the university to see a specialist.
So it was like a full-time job
getting her to all the appointments and the testing and all that stuff.
So that was very hard. Well, I think you're all saying the same thing.
We've got a kind of broken system that lacks transparency, competition, and all of that.
Again, this healthcare price transparency 2.0 addresses all of that.
And until we get that, we're always going to be wrestling with issues like you've
just described. Thank you.
Thank you, Senator Braun. Let me take Chairman's privilege to pick up on a point
that Senator Braun made. He and I agree with the diagnosis.
We have a health care system which is broken, which is dysfunctional.
In my view, its main function is to make huge profits for the insurance companies
and the drug companies. companies.
Meanwhile, our life expectancy is far lower than many other countries.
We don't have enough doctors, nurses, mental health practitioners,
pharmacists, you name it.
We need a fundamental overhaul of our healthcare system.
Whether Congress is able to do it, given the power of the insurance companies
and the drug companies and big money interest, we will see. Senator Hassan.
Thank you, Mr. Chairman, and thank you, Ranking Member Cassidy, for this hearing.
To the witnesses, thank you for being here today because this is really,
really important for us to hear and understand.
And before I turn to my questions, I just want to highlight the long COVID research
that's happening in New Hampshire and the need for consistent investments in this work.
So this is more for my colleagues than for the three witnesses.
Patients in New Hampshire have benefited from the research and care happening
at the Dartmouth Post-Acute COVID Syndrome Clinic.
The clinic has received some federal funding through NIH, but additional funding
to expand services for patients has been delayed because of uncertainty around
consistent long-term federal funding.
We have to work in a bipartisan manner to come to an agreement on long-term
government funding, including to ensure reliable research funding that supports
millions of Americans who are experiencing long COVID.
So now to my questions to the panel. Ms. Beal, I want to start with you.
And this is a follow-up on questions you've heard and discussions you've had
with Senator Murray and just now Senator Braun.
In New Hampshire, our clinic at Dartmouth Health is the only long COVID clinic in the state.
The clinic is in the Upper Valley region of New Hampshire. And as a result,
some patients may have to drive hours to get there.
You've talked about the impact of long car rides on your condition,
but it can be really hard for any patient, especially those experiencing symptoms
of long COVID, to have to engage in that kind of travel.
That's just one example of the barriers that patients face to accessing the
care they need, but I just would like you to elaborate what has it been like
for you with the symptoms you have to have to make long trips for your care?
Thank you for your question, Senator.
There have been many times where I've wanted to cancel appointments because I'm sick.
I don't feel good or, you know, I have zero energy.
And my husband's at work. He can't take off work to drive me everywhere.
You know, he's our only income.
So, yeah, there's plenty of times that I'm driving to my appointments and I'm just I'm so sick.
And then I get into the appointment and I'm in front of the doctor.
And I don't always remember every single thing that I need to say.
I forget the biggest symptom that I need to talk about or I forget my questions.
And all I'm thinking about is, gosh, I don't feel good. I just wanna go back
home. And it's hard, it's really hard.
Yeah, and I think it speaks to not only the challenges of long COVID patients,
but just generally whenever patients with chronic illness have to travel a long time.
So that's why rural healthcare care and having multiple places that can address
various health care issues is so important.
Ms. Vasquez, my office has heard from grant estaters with long COVID who are
facing difficulties accessing and affording the health care that they need,
just as you have discussed.
One study suggests that patients who experience conditions like long COVID and
chronic fatigue syndrome could face an average of $9,000 annually in medical bills.
So, you talked about your experience in the out-of-pocket payments you've needed to make.
But from a policy perspective, what can we do to protect patients from these costs?
What are the recommendations? I know you've been advocating on this front.
Yes, I think there absolutely needs to be government funding for research,
which takes place in clinics and in long COVID clinics.
And additionally, we have to hold health plans and especially managed care plans
accountable for adequately reimbursing for services like care coordination.
If you're working with 10 different specialists, you're going to need a care coordinator.
And these are services that, again, that health plans are required by law to
provide, and they're not always doing that. So some of our oversight function
could also come into play here as well.
Finally, to Ms. Heim, the small team at New Hampshire's Long COVID clinics serves
around 60 new patients per month and hundreds of existing patients,
and the rate of referrals to the clinic isn't slowing.
About 6% of New Hampshire has Long COVID.
It's clear that patients need access to more medical providers who can recognize
and treat Long COVID. What would you like to see change in how providers understand
and treat children with symptoms of long COVID?
I know that's your particular area of expertise at this point.
I would say just as we do a screening for depression with teenagers,
let's say, why can't we do a write-up that screens for long COVID?
Yeah. And we can not only have it at the doctor's office, but put it online so people can access it.
And then if they, you know, realize that this might be what's affecting them,
they can get in contact with a specialist, even have it accessible to the schools.
Yeah. So if they have a child that's coming into the school counselor's office
or missing a lot of school, it might raise a red flag and they can just put
a document in front of them. And that could start the process.
And then, of course, telling the doctors what's going on. Just giving them information
we already have. I mean, I know so much just after the past couple years.
And I tell every doctor I see, but that's not going to make much of an impact.
So why not get it out there to everybody, what we know already?
Right. Well, I appreciate that. And it strikes me that interacting with school
nurses and getting school nurses engaged in this This is one way to make sure
that the schools have that information from the viewpoint of a health care professional.
So I appreciate that. Thank you very much, Mr. Chair. Senator Cassidy?
Yeah, I'm a doctor. You're going to see my questions kind of reflect the technical aspect of this.
By the way, you're talking about having to leave West Virginia,
a beautiful state, to move to be closer.
You're talking about Ms. Beal, et cetera, same sort of story.
Is telemedicine, are people using telemedicine for this?
Because I'm thinking that probably the examination is not showing very much.
It's an interview and they're asking your response.
So is Virginia Medicaid covering telemedicine or your insurance plans covering telemedicine?
You know, I can say that, yes, my health plan is covering telemedicine.
However, many of the specialists that I and others have seen are out of network
and sometimes sometimes even out of state, which are not necessarily always covered.
Many of the folks who have treated— Now, are the doctors themselves,
herself, himself, requiring you to show up in person, or will they do a telemedicine
interview as at least an intake interview? It depends.
And I think for those of us who can get in that first appointment via telemedicine,
it's great. But so many are in boutique practices.
Ms. Beal, your experience?
For me, telemedicine, telehealth is available with my health insurance. However,
When I'm seeing a specialist, I want to see them. I need to be in the room with
them. I want them to see me, all of me.
Oh, I get that. Believe me, there's a therapeutic aspect to that interview,
which as a physician, I'm so aware of.
Sometimes for follow-up, it helps, though, particularly since you had mentioned
the drive is so fatiguing.
Ms. Heim, your experience? When
we lived in West Virginia, WVU had a telemedicine office for children.
So what would happen was we'd go see the specialist in Morgantown,
and then for prior visits after that, we would go into an office and see a nurse
or a PA, and they would essentially wheel the doctor in on a screen,
and we would still get that visit.
That was powerful. However, as a child, they required us to be at the hospital
to do colonoscopy and pulmonary.
All the testing always had to be done at the hospital.
So even with that help of the telemedicine, we still had to travel quite a bit.
But children's, of course, they have not done the telemedicine because a lot
of times the doctors aren't licensed in different states.
So you have to be in the state in order to see the doctor.
So sometimes we'll drive and just kind of park and then see the doctor on the side of the road.
But that's not very convenient. Now, you've been involved in children's.
And as you all were talking, I was on PubMed looking at some of the articles and stuff.
And the therapies, are they actually giving your child therapy at children's?
Put it this way, is she in clinical trials testing different therapies as to
what might be benefiting her?
So there's two separate things. There's the long-quivet clinic,
which has the doctors and the specialists, and then there's the NIH study that's
run through children. So the study is just gathering information.
It is observational. Two of my children are in that study because as a parent,
that was the only thing we could do to help the situation is to give them information.
So we just do the study to help. We get information sometimes,
but mostly it's It's just them, you know, doing testing and questionnaires and stuff.
The actual clinic has offered advice and treatments, and some of them have helped, yes.
Okay. Now, the treatment, some of them are like massage. You had mentioned how
massage therapy, et cetera.
Are any of them clinical trials? We're going to try this drug versus placebo
to see if this drug is beneficial.
So I don't know if it's trials necessarily, but again, they've learned that
there's COVID in the stool, right? Right.
So one of my daughter's symptoms was she was nausea and vomiting and constipation
and pain every day for like six months.
She walked around with a puke bag in her hand all the time.
And when we found out that it might be in the stool, we did a clean out through
a colonoscopy. That was kind of by chance, but nevertheless.
And then we started on a pro and prebiotic.
That children's recommended, and those symptoms almost completely went away. Really?
Yes. That's great. And that was not part of a clinical trial.
No, but that's what I'm saying.
I want the doctors to know what we're learning because somebody could be having
nausea and vomiting and pain, and all they got to do is clean out their gut
because COVID's still there a year later.
Well, the probiotics helped. I mean, obviously, it's more than cleaning out
the gut. But anyway, that said, Ms.
Vasquez, post-exertional issues are major.
I think everybody's describing you get tired, and you are the runner,
so you're going to notice it most.
So has there been, and I've read that there are some problems with the mitochondrial,
so this may not be reparable.
But in other cases, they're talking about how gradual physical therapy,
et cetera, can actually be a positive thing.
What therapies have been attempted for you as a former runner to attempt to
recover your ability to exert?
Dessert? As a former runner, I know what it's like to push through and overtrain
to the point of stress fractures.
And exercise is not good for me, especially when I... But there's things,
there's passive resistance, for example, where the physical therapist kind of
moves you back and forth, et cetera.
And I'm not prescribing that. I'm just wondering, what's being tried?
You know, I will say that there's just so much evidence that post-exertional
malaise is the downstream effect of exercise.
And I think exercise and movement will improve when we manage the upstream drivers
of post-exertional malaise. Okay. Okay.
Mr. Chairman, I hear you.
You're welcome. Senator Cain. Thank you, Mr. Chair. And I really appreciate
the witnesses being here.
I think it's an honor to testify before the United States Senate.
It can also be a hassle, but for y'all, it's an additional burden.
It's a burden to come. And as Ms. Beal testified, or as Ms. Vasquez traveling
across the United States, or Ms.
Heim here with family, you're going to suffer a consequence from having been
here today, likely fatigue.
And so we don't have a lot of witnesses who have to come over the mountain the
way you've had to, to be here. And I really appreciate it.
And I've, you know, I've been dealing with my own lung COVID issue for almost
four years. It's mild, thank goodness.
I feel like every nerve ending in my body's in an Alka-Seltzer 24-7.
And it is, I can work, I can focus, I can exercise. It's harder to sleep.
After six months and then not going away, I finally decided,
I guess, maybe it's not going I should see a neurologist, and I have been able
to be told this is probably not going to get worse, and it's probably not going
to get better, and both have proven true.
Two other colleagues, one a former colleague, Senator Inhofe,
and a current colleague, Senator Young, we wrote a piece about our own experiences
together that I'd like to introduce into the record, if I might, Mr. Chair.
And the reason that we wrote it is, Ms. Vasquez, you pointed out,
and I think subsequent testimony is underlined.
Long COVID is disproportionately affecting
people of color. Long COVID is disproportionately affecting women.
But, you know, we're three white guys. One got long COVID in his 40s, Senator Young.
One got long COVID in his 60s, Senator Kaine. One got long COVID in his 80s, Senator Inhofe.
And we decided after kind of finding ourselves on the floor of the Senate,
bumming around and wonder if anyone else is having this weird experience.
We are, we found each other and shared our experiences.
And I think that the reason that we all started to be public about it is we
didn't like that. You weren't being believed.
Believed. U.S. senators get believed, you know, if I, if I, well,
by a certain percentage of the population.
I didn't have trouble getting believed by a, by a doctor.
I didn't have trouble getting believed by a doctor. And I don't think Senator Inhofe did.
I don't think Senator Young did. Our, our, our physical reports of our own conditions
were given credibility.
But so often with women, that's not the case.
With minorities, that's not the case. With young people, it's not the case.
We've seen the similar phenomenon in maternal mortality when we've had hearings about this.
And so we decided, the three of us, to talk about our experiences so that people
would understand they're being believed. And, Mr.
Chair, by doing this hearing today, we can approach some substantive improvements.
But also, I think doing a hearing like this has a way of sending a message that
people are believed. believed.
Ms. Beal, I don't want you to say more than you comfortably feel like you can,
but can you talk a little bit about this SSDI ordeal and that you've been,
I mean, the ADA says long COVID is a condition,
a disabling condition that can be one that would either require reasonable accommodations
or lead to an SSDI disability determination.
But But in a situation where you're already low energy, you're going through
an extended process where you've already been denied twice.
Talk a little bit about how frustrating that might be. And you are a human resources
professional who've helped employees do this.
So imagine if you hadn't had that background, how frustrating this would be.
Thank you for your question, Senator.
It has been an ordeal, like you said. The whole process has been very frustrating. frustrating.
The system is very difficult to navigate.
You know, when I'm working on the paperwork, it's very overwhelming.
And I can only work on it, but for so long, I have to, you know,
I set like a little timer for about 30 minutes, because if I go over that,
you know, I start getting headaches.
So, you know, I'm trying to compile all of my medical documentation to send in. and you know.
Both times I was denied, SSDI doesn't give specific reasons why you were denied.
So I don't know what it is that they need for me to show that I can't work.
So you don't know whether it's we don't think you're disabled or you didn't
fill out this piece of information right or you left something blank or you really don't know.
Right. You know, I don't know if they were able to get in contact with all the
doctors. I don't know unless the doctor tells me.
Here's a class of folks with long COVID who really have problems with the SSDI.
A lot of people got COVID before we had tests.
Remember how hard it was to get tested early on? And people who are getting
COVID at the front end, they weren't even getting tested for COVID because there weren't tests.
And then later, okay, maybe they get a vaccine. And then later,
a test will show that they have antibodies in their body. But that could be
because of the vaccine or it could be because they've already had COVID.
And the medical professionals who are trying to make a resolution about SSDI
are like, well, you have antibodies, but that doesn't mean you had COVID.
So there's a set of problems that make this within the SSDI framework really tough.
Now, we've dealt with situations like that in other contexts where we've had
presumptive determinations, you know, for availability of health care benefits
when firefighters get certain diseases that are,
you know, because of conditions that are likely to occur in their profession.
We give them presumptions that can be rebutted if they're not true.
But it is a difficult proof burden, especially on somebody who's really suffering
continuous symptoms of the kind you describe.
And I hope I'm at my time and over it. but I'm going to let my colleagues go,
but I hope that might be something we could focus some attention on.
Good point. Senator Murkowski. impacted you clearly physically.
You've shared that.
But we're living in a time and a place when everybody questions the reality
of the facts on the grounds,
whether it's politics or COVID or just so many different things.
And that's hard. That's hard on the mental health as well.
And so So I would ask each of you if you can speak to the challenges that you
may have had with regards to access to mental health care, behavioral health.
Because I have to assume that as you have been dealing with the physical effects
of this, when you feel like you are being challenged by others, it's not real.
You'll get over it. it, you are making it more than it really is,
that that has to be very stressful.
That has to lead to higher anxiety, and that can lead to real depression.
So if I can ask the three of you to share any thoughts that you may have on
mental health and behavioral health access.
We'll begin with you, Ms. Vasquez. Yes, thank you.
A large part of my out-of-pocket expenses have been for therapy, for mental health care.
I was not, even in Los Angeles, was not able to find a mental health provider
who was in-network who would see me regularly and who didn't require me to drive an hour in traffic.
Um, it was, uh, so that's a big part of my expenses.
I will say also, I have a history of PTSD and trauma before,
um, uh, before getting sick.
And honestly, I think having depression in my health record contributed to the
medical gaslighting that I experienced.
I got a lot of, well, you know, the mind has, you know, really important impacts on the body.
Well, the body has a lot of impact on the mind. And my experience.
I think there's a social-emotional piece to, you know, my depression and my mood symptoms.
And quite honestly, this is a neuroimmune condition, and brain inflammation
has been shown to be linked to many mental illnesses and mood disorders.
And so I 100% believe that as I get better care for my long COVID and ME-CFS,
my mood will improve because my brain won't be as inflamed. Ms. Beal.
Thank you. For me, for the access part of your question, the challenge for me
has been getting an appointment with a neurologist.
So I had a neuropsychological evaluation done, and it took me nine months just
to get that appointment.
And in that appointment, you know, you go through the different mental health diagnoses.
And having depression that I didn't have before I was sick and,
you know, trying to figure out what caused the depression.
Well, in my case, it's the long COVID, you know, it's had that effect on me.
I have insomnia, anxiety, all of that started when I got, you know,
COVID and then long COVID.
So that's been challenging.
Like what you said, dad, what the doctors are saying to you is the same for me.
You need to walk more. You need to be in the sun.
You need vitamin D, all of those things. That'll make you feel better mentally.
And that might help, yes, but the long COVID is causing the anxiety and depression.
So if I'm not treating the long COVID as it needs to be treated,
then the depression and anxiety are going to to continue.
Time, do you have anything to add? I think one of the things that has been hard
for me with my daughter is that she kind of tells herself, well,
I just need to work harder. I just need to study more.
I just need to do this or this or that, and things are going to get better.
And the fact is, that's not true. One of the doctors we work with works with
athletes, and they are studying it. And the more we push, the worse it gets.
And that's very counterintuitive. but with this
thing we have to figure out a
way to treat it without pushing because what happens
is you push harder it gets worse then you feel worse and it's
like this rapid cycle that just goes and and so they have to find a way when
she was doing physical therapy they did go very slow on the recommendation of
that pulmonologist that had the information um so again it's about them getting
the information so we can treat it properly and not create this cycle of depression and anxiety and,
you know, push and then get worse and, you know.
Thank you. Thank you, Mr. Chairman. Okay. Thank you. Senator Smith.
I think Senator, well, I don't think Senator Smith would ever defer to me in
anything other than allowing me to speak first, because I have to go do a press
conference and then get back here.
But I want to echo the appreciation for all of you to show up today and show up every day.
I have one of, as everyone I think here, probably in this room,
knows somebody who's been going through this. I have an old friend who is an amazing person.
She's the first female producer of Monday Night Football, which is a strange claim to fame.
And for her to be debilitated, it's just – I can't get my mind around it.
And I know that you're all going through that same psychological evolution with
yourselves, but with your child.
Um anyway thank you i've
got a a couple questions here um miss vasquez you mentioned your testimony that
the uh tribulations you went through uh attempting to obtain a diagnosis of
long covid um the doctor's mistaking some misbelieving all of that those uh travails uh.
Given the nature of long COVID and also in addition to the symptoms and the
biomarkers from patient to patient,
I think you have spoken, but all of you really referred to the importance of
doing more research, of integrating these stories into research.
And University of Colorado is one of the nine centers that actually got funding
from the Department of Health and Human Services to do some of this research.
And so, Ms. Vazquez, I was going to ask,
What's your sense of what that research should be focusing on?
What should be the priorities?
Well, I think patients, again, via lived experience and diving into the existing
research, really needs to build on the existing research. Long COVID is not a new thing.
ME-CFS is not new. Dysautonomia is not new.
Mass cell activation is not new. And those conditions have historically been
very underfunded compared to the disability that they have contributed to over generations.
And so for me, I think the prioritization is grounding the current long COVID
research in the historical infection-associated disease research. Ms. Beal?
I think the research is extremely important because long COVID is a new illness,
and there's so much that needs to happen quickly so that there can be a protocol
developed and better treatment for us.
You know, I pray all the time for a cure, but I don't know if that will happen for us.
But in the very least, you know, there are some medicines that do help some
patients and there's some different therapies that help patients.
But if I had a list of what's going to work, try this, then I would go down
and try every single one.
But I don't know what that list is. You know, some people try different things
and I don't want to just try different things and make my problems worse,
but I don't, you know, we need to know what we can do so that we can feel better.
Right. Ms. Heim?
As I was saying before, share the information we already have. Get it out there.
I mean, we've, the stuff that we've tried is not expensive, but it's helped.
Like CoQ10 for the brain fog, probiotics, prebiotics, you know,
I mean, there's stuff that you can, everybody can try. They just don't know to try it.
And like she was saying, it gives us hope to at least have
an idea or something we can start somewhere we can
start because if it works it works and we get our lives back
or at least they get better right absolutely what's
there is always an inclination in in science and certainly in health care to
to not present things until you understand how you know all the facts and know
what exactly you're you can recommend and not i think we are what we're seeing
is the necessity of dealing with more uncertainty uh being able to navigate with that.
Ms. Vax says, you also talked about the difficulty of going on and off healthcare.
You all kind of alluded to the challenges of the red tape and the bureaucracy,
but there is a strong demand from the public now to prevent fraud and make sure
that we are being vigilant with every tax dollar that is spent.
What things do you think that we could simplify? And maybe this is a longer
question that you can answer later,
but how can we make this paperwork simpler and yet make sure that we're still protecting,
you know, being careful in terms of protecting against fraud?
Yeah, I will. I will say that the threat and fear of fraud is probably much,
much smaller in reality. Nobody wants to be sick.
Nobody, nobody wants to be disabled in an ableist society.
And so I would
say things we could do is I think presumptive
eligibility would be a huge start for benefits and both disability benefits
as well as clinical services and community-based services because there's just
such a broad population of folks who are living with this. Right, right.
Well, thank you. I'm out of time, but I appreciate. Sorry.
It's a little bit like Jeopardy where you see someone going to the buzzer. Thank you.
Thank you, John. Senator Smith. with. Thank you, Chair Sanders and Ranking Member
Cassidy. And thanks to all of you so much for being here.
You know, health is a very personal thing. And so to be in this room with these
bright lights and share such personal stories about your lives is really much appreciated.
And I really appreciate Senator Murkowski's line of questioning around the kind
of the interaction between mental health and physical health and how one fuels
the other and how connected they are.
So just thank Thank you for your answers to that.
I'd like to just take my time to understand a little bit about how insurance,
how it's working with your health insurance coverage.
And, you know, so there are no FDA approved treatments for long COVID.
And I'm wondering what your experience has been with your health insurance and
their willingness to cover non-approved drugs. And I mean.
I'll be honest, I think a lot of times it's hard for people to get health insurance
coverage for stuff that we have a lot more experience with.
And so could each of you just be willing to talk a little bit about what that experience has been?
And I'm wondering if we might be able to learn something from that as we think
about what we can do to make this work better.
Yes. Thank you for that question. I feel like I will send you a longer story
that I think really highlights this issue,
but I will say generally on my charts and in billing for my long COVID care,
I'm diagnosed with a lot of symptoms and I'm able to get, you know,
prescriptions or treatments for those particular symptoms.
That, again, required my specialist to know how to sort of like bill the care
that they are providing me.
And again, it requires a lot of staff time from their office as well to do prior
authorizations, all of that.
So I do think there's a lot that can be done to,
validate from the insurance side treatments that are for long COVID and not
require doctors to to sort of do the back-end maneuvering to get something covered
when they know it's medically necessary.
This is why I hear from providers all the time that they have to have,
like, full-time staffs that are just trying to figure out how to get insurance
companies to cover care. Absolutely, yes. Right, right. Ms. Beal?
For me, I think it would be helpful if the insurance companies could recognize
long COVID as its own illness,
and then maybe some of those treatments and procedures would be covered more quickly.
I've experienced delays with different things that I've needed waiting for for
the insurance to approve it.
One example is I need oxygen at night and my doctor ordered it in August,
but I didn't get it until I think late October.
And it was because of my insurance company and the company that was providing the oxygen.
So I think, you know, having to wait for something that you need because of
whatever conversation the insurance company is having with with the doctors,
all the stuff that's happening behind the scenes that's taking way too long.
Right. It needs to be streamlined.
Well, and that's got to have a big impact. You're talking about,
for example, suffering from insomnia, struggling to sleep.
And there you have right there something that could happen that would be useful.
Why do you have to wait? Right. Exactly. Ms.
Heim, I'm really interested in your answer to this question.
And I'm also wondering, as I understand it, your daughter was able to get connected
into a long COVID study at Children's National.
And I think often our problems in health care, like you could just sort of multiply
them for people that are living in more rural communities.
And so, you know, it's like just always worse, it seems.
Could you just maybe talk a bit about your own experience with insurance and
then how it has worked with your daughter, how her care has,
I wonder, been improved because she's been able to be part of this larger hospital study?
I would say yes, absolutely. Absolutely. I'm very fortunate that she got the
diagnosis so quickly and got referred into this group.
And the study is just separate. It's informational.
It's its own entity. But the actual long COVID team that they have,
my poor doctor's office, I mean, they had to not get authorization for the head
of the team, but every single doctor on the team.
So it was months of back and forth paperwork. And in the meantime,
they were trying to do tests.
They thought she She had narcolepsy at one point because her fatigue was so bad.
And just to get the sleep apnea test, all the crap that they have to go through
to just get the test approved is a nightmare for the doctor's offices.
And again, as this is happening, I'm watching my child suffer.
I'm watching her sit down in the middle of a grocery store and just say, I can't go anymore.
And meanwhile, I'm waiting. I'm waiting. I'm waiting. I'm waiting to find the
answers. So yes, that's very frustrating. Right.
Chair Sanders, I often feel that our insurance companies are designed to figure
out how to deny care rather than to provide care.
And I think that these stories illustrate what that means for people that are
living with long COVID. Senator Smith, you are exactly right.
And that's why I intend to bring the major insurance companies here.
These companies make tens of billions of dollars in profit every single year.
And there are very few Americans who don't have to struggle to get the care that they deserve.
So that's an issue we will deal with in this committee.
Senator Markey, and I would, before Senator Markey goes, I would remind everybody
that we have, this has been an extraordinary panel, but we have four experts
who are going to at least tell us,
what kind of progress we're making in understanding the disease and treating it. Senator Markey.
Thank you, Mr. Chairman, very much. Thank you for this hearing.
Thank you, Senator Kaine, for your continued leadership and partnership on this issue.
Um covid is real and
it is um disabling and um
and we know that we have to work on it
the the numbers are staggering actually from nih staggering that of people who
have covid have had covid 22 to 38 of them are experiencing long covid can i
say that number again of people who have had had COVID,
it's 22% to 38% who have long COVID.
And that may be an underestimation according to NIH.
So even as we talk about 5% of adults have had it, think about the people who
have had it and why people who haven't had it should be very careful.
They should be masking. They should be getting vaccinated because there's a
high probability they will have long COVID. it.
That's what NIH is telling us. So all the warning signs are there.
We thank all of you who are here for your leadership, for your willingness to be here.
And I just hope people understand it.
This is not going away. It's still there.
And if you get it, there's a very high probability that you're going to have long COVID.
So just something that I think has to be made clear over and over again.
In 2018, I introduced a resolution raising awareness of chronic fatigue syndrome.
Like long COVID, this illness can come up after fighting off a virus.
Now we're seeing more and more people navigating both ME, CFS,
and long COVID, and they are fighting for recognition.
Of both conditions. People don't believe the patients.
They think that there's some phony, you know, pretend disease that people have.
Well, we know that's not the case. And that's what our witnesses are making very clear here today.
And meanwhile, research into these and other infection-related chronic illnesses
is sorely overdue and underfunded.
And this has has left patients without answers and health care providers without
the training to treat them.
It is unacceptable to force people to fight their chronic illnesses and a health
system that doesn't recognize their illness.
We need to fund research to coordinate and fund research on conditions triggered
by viral infections that will drive us towards diagnosis and treatments and cures.
Us, researchers, medicines, fields of dreams from which we harvest the findings
which we need to give help to those who are affected.
So, Ms. Vasquez, in your testimony, you shared how your symptoms were dismissed
in the early days of the pandemic and health providers didn't acknowledge the
link between viral infections and chronic illnesses.
Ms. Vasquez, what would coordinated efforts at the National Institutes of Health
to better understand infection-associated chronic illnesses mean to you and
to all of those who have had similar experiences?
I think if the NIH really embraced the reality of infection-associated diseases,
we could actually do some incredible science to drive the science forward.
I mean, I mean, just historically, we didn't believe multiple sclerosis existed.
And then we got better imaging and saw all the lesions.
And now VA research has shown that Epstein-Barr virus, the virus that causes
mono, is very associated to the point of potentially causing multiple sclerosis.
So, if we really embrace sort of the history of infections triggering disease,
we can do some really cool science around microclots or viral persistence.
The science is happening on such a small scale, but the U.S.
Could really be the leader for a cure for these kinds of conditions.
Yep. So, we believe you.
Thank you. We know you're not faking it.
And we know that 22 to 38% of those people who have had COVID are not faking it.
Otherwise, there wouldn't be so many of them.
So it's absolutely imperative that we provide the funding for research.
Yep. That we have our top scientists working on this issue,
or else we're going to have people with this debilitating illness who have to
be out there wondering why they're being stigmatized when there's an underfunding
of the research needed in order to provide hope for those families.
So thank you all so much for being here again today. Thank you. Okay.
This ends our panel with patience. And I know I speak for every member of this
committee in thanking you.
It's not been easy for you literally physically to get here.
And your testimony has been extremely powerful and helpful in allowing us to go forward.
So we are very grateful to you being here. Thank you very much.
And now we're going to hear from our next panel.
Thank you.
We just heard an extraordinary panel of patients,
and now we're going to hear a panel of experts, doctors and experts who are
studying the issue and trying to help us come up with some solutions to this crisis.
We have four very well-qualified panelists, Dr. Michelle Harkins, Dr. Ziad Al-Ali, Dr.
Sharice Madlock-Brown, and Dr. Tiffany Walker. We thank all of them very much for being with us.
Our first witness is Dr. Harkins. He's a professor of medicine and division
chief of pulmonary critical care and sleep medicine at the University of New Mexico.
Dr. Hawkins, thanks very much for being with us.
Thank you. Good morning. Thank you, Chairman Sanders, Ranking Manager Cassidy,
and the distinguished members of this committee.
My name is Michelle Harkins, and I am a pulmonary critical care physician from
the University of New Mexico in Albuquerque.
I'm honored to appear before you here today to talk about the impact long COVID
is having on patients and to provide recommendations to this committee based
on my work as a clinical researcher, a clinician, and an educator.
I'm an an ICU doc in a busy urban medical center and was in the trenches with
the critically ill COVID-19 patients that were dying since the beginning of the pandemic.
I was our lead investigator for
many COVID clinical trials, including the NIH-funded platform networks.
As the initial phases of the pandemic changed and we began to learn more about
long COVID and the effects that COVID-19 was having on patients,
UNM joined the NIH Recover Initiative initiative to help understand this new
disease, and we will participate in recover clinical trials.
I want to share a story about a mid-career primary care doc in rural New Mexico.
After serving her community and treating patients for years,
she herself became infected with COVID-19, and then months later,
she presented with signs of long COVID, including fatigue,
brain fog, and difficulty breathing during even short periods of exercise.
Two years later, these symptoms so impacted this patient that she eventually
decided to leave her work, unable to maintain the mental recall needed to do
her job in order to concentrate on her health.
The NIH Recovery Research Initiative is poised to systematically study risk
factors that lead to long COVID and ultimately lead to treatments that are individualized
to certain patient subsets.
Thank you for this committee and all the work that you have done to fund this
important initiative, but the research and clinical needs are still ongoing.
In addition to research and clinical care, I have a passion for sharing emerging
new knowledge with my peers and learning from them about the challenges they
face in their own communities of practice.
When the pandemic began, I worked closely with Project ECHO.
Leader of the ECHO model, an innovative method of creating virtual communities
of practice to help accelerate peer-to-peer knowledge in a trusted community.
We set up a virtual ECHO network to support the hundreds of healthcare providers
across my state who are struggling to treat critically ill COVID-19 patients
in their hospitals and clinics.
And when the initial waves of the pandemic slowed, we then set up a parallel
program for primary care providers to identify and help treat their long COVID
patients, which was a HRSA-funded initiative. Through this program.
Our team has helped train over 800 providers, mostly in New Mexico,
but across the entire United States, on how to best identify patients and support them with long COVID.
I believe the federal government and this committee in particular can help support
patients with long COVID in several ways.
Number one, need for continued investment in ongoing research.
We need to continue the funding for the research of long COVID and understanding
this very complex disease and its underlying mechanisms will translate into
treatments for patients.
Clinical trials should reflect the demographics of our population,
so improving access for rural participants and those disproportionately affected by the disease is key.
Number two, making access to clinical care easier for patients.
We need multidisciplinary clinics with teams of subspecialists and healthcare
providers together to address the myriad of symptoms, complexes that these patients face.
To make this vision possible, we need to address reimbursement for providers
in a a multidisciplinary long COVID clinic, who are seeing the same patient,
multiple providers for the same illness on the same day.
Asking CMS to provide guidance on the billing codes, reimbursements for long
COVID, and how this code can best be used in multidisciplinary care is needed.
Three, we have to prevent the recurrence or occurrence of long COVID.
Vaccines do reduce the risk of long COVID, and so reducing new acquisition and
administration costs to give of vaccines in rural clinics and other institutions
would improve access to care,
and supporting clinicians across the country to have access to the most up-to-date
information in trusted communities of practice.
So creating a national network of regional communities of practice that meets
virtually and can then disseminate and share information involving new research
findings and new treatment options to patients is key.
This is tele-mentoring for providers, but in theory, this model could be used
to create regional long COVID clinics where the experts actually see the patients directly.
Expanded investment in the development of a national network of tele-mentoring
would be a huge difference.
Difference this national network of local providers and regional and national
experts once created would then be available to help respond to the next pandemic
or health emergency when it arises.
Thank you again for the opportunity to testify, and I'm happy to answer your questions.
Thank you, Dr. Harkins. Our next witness will be Dr. Ziad Al-Ali,
Assistant Professor of Medicine at the Washington University School of Medicine.
Dr. Al-Ali, thanks for being with us.
Chairman Sanders and Ranking Member Dr. Cassidy and members of the Health Committee,
thank you for the opportunity to testify today.
I'm a physician scientist at Washington University in St. Louis.
My team and I produced the first systematic characterization of long COVID and
so far the most widely cited research on long COVID.
We've been at the forefront of long COVID research since the early days of the
pandemic when patients started telling us that they're not fully recovering from COVID-19.
Now, long COVID represents the constellation of long-term health effects of COVID-19.
It is a multi-system disorder that can affect nearly every organ system.
It affects the brain. It affects the heart.
It affects the endocrine system. It affects the immune system.
It affects the GI system.
Long COVID affects at least 20 million Americans. It affects people across the lifespan.
We have kids with long COVID. We have people who are 100 years old with long COVID.
It affects people across the lifespan and across demographic groups.
The burden of long COVID, the burden of disease and disability from long COVID,
when you measure it, is on par with the burden of cancer and heart disease.
And even if people emerge unscathed after having the first infection,
they can still get long COVID after reinfection.
And I don't think enough people really know this fact or know about this.
Recovery rates of long COVID are also low.
Between low rates of recovery from long COVID and the cases that are due to
reinfection, we're supposed to see continued rise in the burden of long COVID
until we find better ways to prevent it and treat it.
Now, you should be asking me now, how do we prevent long COVID?
Well, the best way to prevent long COVID is to prevent COVID in the first place.
There is actually no long COVID without COVID.
You know, if you go back to 2019, you go back to 2018, None of us have heard of long COVID. Have you?
You haven't. It didn't exist. There is no long COVID without COVID.
We need a sustainable multi-pronged approach to prevent repeated infections
that would be embraced by the public.
This requires accelerating the development of oral and tranasal vaccines that
block infections. This is very, very, very important.
Ventilation and air filtration systems are also very important.
They can play a major role in reducing the risk of transmission of airborne pathogens.
We also need variant-proof vaccines. What the virus is doing is really continuing to mutate on us.
You know, every few months, you're going to see a new variant.
We need a variant-proof vaccine that lasts for a long time, that is durable,
that offers durable immunity.
People are sick and tired of having to have boosters every few months.
We need vaccines that last for five years or so, so they can get it done and
get it over with for five years.
We must also understand vaccine side effects. This must be acknowledged and
understood very, very deeply. This is very, very important.
Now, you should be asking me also, like, how do we treat long COVID? You've heard it before.
There are zero, zero approved medication for the treatment of long COVID.
So these people have nothing to really lean on for curative treatment. Nothing. Zero.
Zero FDA approved medications for the treatment of long COVID.
This must change. We really need to change this. It's not beyond the might and
the prowess of American medicine to solve this problem.
It's absolutely not. We've solved much, much harder problems in the past.
We just need to focus on this and solve it. We are the best nation on earth, and we can solve this.
It's absolutely not beyond our prowess to address this.
Now, people suffering from long COVID need treatment yesterday.
You know, the ongoing and planned trials for long COVID are too slow and too
small to offer definitive treatment.
We've developed vaccines at rapid speed, at warp speed.
You know what we're doing with long COVID? We're doing trials for long COVID
at snail speed. This is what we're doing.
We urgently need trials, large-scale trials, to test a broad array of repurposed
drugs and development of new drugs to treat long-term patients.
We must also identify that there is a barrier that is preventing the pharmaceutical
industry from entering the game of long-term treatment and doing private long-term treatment.
You could be asking me now, is COVID-19 effective to reduce long-term patients?
The answer is yes. People reported debilitating fatigue, having to decline,
and Parkinson's disease after the Spanish flu, how we disrupted under the rug.
Other viruses, including polio and hipstone bar virus, can cause obstructive pain.
EDT can cause obstructive pain. Chronic fatigue syndrome, or MTCFS,
is also linked to a viral illness, a flu-like illness. It's a debilitating disease
that affects 4.3 million people in the U.S.
These patients have been marginalized and ignored for decades.
So what do we learn from all of this? Well, we learn from all of this that acute
infections, what I learned, the lesson number one from this whole pandemic,
that acute infections can lead to chronic disease.
That pandemics disable people. And this is not new.
It happened after the Spanish flu. But we just ignored it. We just swept it
under the rug. We call all of this broadly infection-associated chronic illnesses.
This includes long COVID and includes ME-CFS and other basket of conditions
that emanate from acute infections.
And had we connected the dots between acute infections and chronic disease before
the pandemic, we'd have a much, much better place to actually address the challenge of long COVID.
We failed to connect those dots before the pandemic. Let's not do that same
mistake again and be poised and ready to really, you know, address the challenge
of long COVID and also the next pandemic.
So where do we go from here? The research effort of long COVID must match the
urgency and the scale of the problem.
This is my opinion as a related must.
And this is going to require a coordinated approach. In my opinion, the U.S.
Should consider the establishment within NIA, COVID and ECFS that have been ignored for a long time,
and other infection-associated chronic illnesses.
You have an historic opportunity to act. The lives of millions of people here
and around the globe, now and in the future, depend on this. Thank you.
Thank you. Thank you. Our third witness is Dr.
Sharice Madlock-Brown, Associate Professor of Health Informatics,
the University of Iowa College of Nursing.
Dr. Madlock-Brown, thanks very much for being with us.
Chairman Sanders, Ranking Member Cassidy, and members of the committee,
thank you for the opportunity to participate.
Since 2021, I've been the co-lead for the National COVID Cohort Collaboratives,
and that's N3C, their social determinant of health domain. main.
At N3CN, there was a diverse team of epidemiologists that leads our data related to.
This diversity is key to studying long COVID's impact across different groups.
However, using data from these systems presents challenges like differences
in utilization by subgroups and incomplete health records. These issues are
partially addressed through privacy-preserving linkage between health systems
and integrating billing data systems.
These network efforts, such as N3C, are crucial in overcoming observational
data limitations, such as the lack of standardization in these systems.
Large networks have been instrumental in implementing harmonization pipelines
and promoting data standardizations at a national level, thus enhancing the
reliability and comparability of research findings on long COVID.
Identifying patients with long COVID in electronic health record systems presents
a challenge as the condition is severely underdiagnosed.
Analysis of the long COVID code that came out in October of 2021 in the N3C
system revealed demographic disparities in long COVID diagnosis,
where patients who were female, white, non-Hispanic, and living in areas with
low poverty and low unemployment were more likely to receive a diagnosis,
which emphasized the need for greater accessibility to diagnosis and treatment.
Researchers do have several options to identify patients with long COVID in these systems.
For instance, at N3C, one team developed a machine learning model which showed
high accuracy in classifying patients without a diagnosis.
So the model was trained using data from patients who'd visit a long COVID clinic.
At the same time, other observational studies focus on improving self-reporting
of symptoms like brain fog and fatigue.
Researchers using these electronic health record data warehouses have been pivotal
in helping us understand both COVID-19 and long COVID, revealing key symptoms and risk factors.
One review by Sudra has identified common symptoms, while others have really
shown the variability in post-COVID conditions across different populations.
To further characterize long COVID, one N3C team used computational modeling
to classify patients into six distinct clusters with an emphasis on indicating
cluster severity of condition.
And another analyzed data from thousands of patients categorizing symptom co-occurrence
into neurological, cardiopulmonary, gastrointestinal, and comorbid condition
clusters, which can help us understand the trends in long COVID broadly.
Infection-associated chronic illness is not new.
There is a significant intersection in symptomology between long COVID and a
spectrum of related chronic conditions, notably myalgic encephalomyelitis,
chronic fatigue syndrome, or ME-CFS.
Studies have shown that 50% of long COVID patients fit ME-CFS criteria.
The emergence of long COVID has cast a spotlight on these conditions,
underscoring the urgent need for more research into their shared characteristics
and underlying mechanisms. There is a critical need for a moonshot initiative to tackle long COVID.
The scarcity of clinical trials focusing on long COVID's underlying causes and
treatments poses a barrier to progress.
A call to actions by patients and researchers poses that the U.S.
Government leads this initiative with a significant annual investment like the
Cancer Moonshot Program to inspire global action against this widespread health challenge.
Key priorities for the Moonshot Initiative should be conducting clinical trials
for behavioral and experimental medicine treatments.
In tandem with clinical trials, several activities can support observational
research systems like N3C to enhance our understanding of long COVID and bolster trial findings.
Activities can include symptoms and fetotypes across the swath of infection-associated
chronic conditions, improving diagnosis and treatment accessibility,
and establishing clinical guidelines for consistent diagnosis.
Additionally, the Moonshot should emphasize coordinated clinical programs for
underserved communities,
structuring clinical data for better research, including incorporating social
determinant of health data to better understand biases in health and disparities in outcomes,
and linking these systems with clinical trials and data sets like claims and
mortality for more comprehensive representation of patient health.
These efforts aim to advance the understanding and treatment of long COVID,
ultimately leading to better patient outcomes.
Dr. Madlock, Dr. Madlock, I want to thank you very much.
Our next witness will be Dr. Tiffany Walker, Assistant Professor,
Emory University School of Medicine.
Dr. Walker, thanks very much for being here. Thank you so much.
I'm Chairman Sanders, Ranking Member Cassidy, and Distinguished Members of the Committee.
My name is Tiffany Walker, and I'm Assistant Professor of Internal Medicine
at Emory, Staff Physician at Grady Memorial Hospital, a large urban safety net hospital.
I'm site PI for RecoverMedic Cohort and PI of multiple clinical trials in Long
COVID, as well as the PI for the AHRQ Atlanta Long COVID Collaborative Center of Excellence.
The views I express today are my own and do not reflect the views of my employer.
I'm honored to provide this testimony today, and I aim to convey how imperative
it is that we continue to invest and support research defining the biological
drivers of Long COVID and the urgency to identify effective treatments.
We have seen that anywhere from 15 to 38 percent of COVID survivors develop long COVID.
To provide a stark comparison, this is commensurate to the rate of diabetes in our population.
Long COVID can significantly impact patients' quality of life and function,
and long haulers are more likely to be unemployed and work reduced hours,
which has been addressed multiple times today, with recent CDC data supporting
that over a quarter of long haulers suffer from significant activity limitations.
Disease duration remains unknown. However, mounting evidence supports significant
overlap with infection-associated chronic illnesses such as ME-CFS and dysautonomia.
These are debilitating diseases that for many last lifelong.
Economically disadvantaged populations have been disproportionately affected
by long COVID, with African American and Hispanic Americans experiencing higher
rates of long COVID and nuance at diabetes and cardiovascular disease.
Impaired health literacy in economically disadvantaged populations impacts recognition
of symptoms and therefore access to care.
Furthermore, lack of coordination in long COVID care is amplified in these underserved
minority populations that have longstanding history of poor access to affordable,
quality health care. We absolutely see this in our greedy population.
However, long COVID is not limited to this population.
Although young, previously healthy adults have largely been spared from severe
illness in the setting of acute COVID, it's important to highlight that long
COVID can cause illness in anyone. And I think that we saw this today in our panel.
Previously healthy patients who had mild acute COVID infections make up a significant
portion the patients we're seeing in our long COVID clinics.
In fact, CDC data suggests that adults aged 30 to 60 may be at highest risk,
impacting our working-age adults and those of child-rearing ages.
Congress' investment in the RECOVER initiative well positions researchers like
myself to define the clinical scope of long COVID and characterize biological
drivers of this disease.
This is critical because a comprehensive understanding of the organ systems
involved can guide clinical care.
It can mitigate the unnecessary spending on extensive diagnostic workups,
which is happening all the time.
And defining these biological drivers helps us identify biomarkers that we can
use to diagnose and monitor long COVID, which I know has been addressed already,
as well as it helps facilitate...
Identification of intervenable targets for drug development.
So this is very important. We need to know what we're targeting.
However, at this time, NHLBI anticipates concluding the cohort in May 2025.
This decision does not account for the ongoing high COVID-19 case rate,
protracted nature of long COVID symptoms, or concerning evidence of potentially.
Immunodeficiency that warrants long-term monitoring in this population.
Now is not the time to de-escalate funding for long COVID. Likewise,
the RECOVER initiative hosts well-designed clinical trials.
However, current funding is largely siloed through the RECOVER mechanism,
stifling opportunities for further innovation.
Despite RECOVER's best effort, the trials are often launching sequentially because
there are finite resources for one institution to run all high-profile clinical
trials for the entire U.S. population.
Population. Trial funding needs to occur at a much greater scale and should
not be limited to one consortium.
Seasoned clinical trialists and long COVID experts providing care on the ground
level should have input.
I propose leveraging real-world data to capture patterns of off-label drug use
to identify promising candidates that can be rapidly deployed in adaptive platform clinical trials.
This winner-take-all trial design expedites drug development by using real-time
data to reallocate patients to drugs showing efficacy and retire drugs showing futility.
This results in reduced patients on placebo, reduced costs, reduced timelines.
This model shows significant promise for sustainable infrastructure that can
be rapidly scaled to identify treatments for future outbreaks of emergent infectious
diseases, bolstering preparedness.
So in summary, my recommendations are to expand Expand recovery initiative funding
to support extension of the observational cohort.
Expand funding for long COVID adaptive platform repurposed drug trials independent
of the recovery mechanism.
And then in closing, I would like to extend my humble gratitude to Senator Koehn
and colleagues for advocating for the AHRQ Long COVID Initiative.
This is a five-year effort that supports essential infrastructure to expand
person-centered long COVID care across the U.S.
And we feel strongly that this support will be paramount in improving care access
and quality and will guide policy change and long COVID care delivery. Thank you so much.
Thank you very much, Dr. Walker.
First, I'm going to offer an apology. I've got an emergency leadership meeting
in a while that I'm going to have to run out to, and I'll give the seat here
over to Senator Baldwin. Okay.
Let me start off with this. It goes without saying, I think,
that many of us understand that at a time when we, A, have a major disease,
which has been under-discussed, under-appreciated, that while we have put some
federal funding and some good work has been done, much more needs to be done.
So to my point, that's a given. All right. But what I want to go beyond that,
and it's to ask all of you, starting with Dr.
Harkins, is if I am an individual with long COVID, as people in this room are
and people in another room are, the overflow room,
give us some optimism here. Where do you think we can be going?
Are we seeing any breakthroughs in terms of understanding the disease and providing
in reasonably short term some treatments for people who are hurting very badly right now?
Dr. Harkins? Thank you. Well, I know we all want answers yesterday because patients are suffering.
I think looking globally and with the studies that are going on currently in
the U.S., we are finding answers.
We are finding trends. We are clustering patients into different subgroups.
However, this is really complex. And as my colleagues have mentioned,
it affects every organ system. All different cells are involved.
And so trying to come up with a one-size-fits-all is not going to work.
And so I think we're learning more about muscle dysfunction in the post-exertional
malaise patients, for example. Now, what we do with that information,
there's actual structural damage that occurs post-exercise.
So what we do with that information now will be critical in,
you know, what can we do to address that and improve their symptoms at the time,
and educating providers so that the patients are heard and felt like they have
a partner in this. Thanks, Dr. Al-Ali.
We've made a lot of progress in understanding the biology of long COVID.
We understand what happens in the brain, for example, in a lot of patients with
long COVID, low cortisol level,
low serotonin level, fusion of the neurons that actually disrupt cognition and
neuroinflammation or inflammation in the brain and some structural abnormalities
in the brain have been documented in people following SARS-CoV-2 infection.
So I would understand. I mean, that's really only to talk about the brain.
There's a lot of literature also on the heart and other aspects.
We made a lot of improvement or progress in understanding the biology of long
COVID. And also, we don't understand quite a bit the epidemiology of long COVID.
We understand that, you know, vaccines work, reduce the risk of long COVID.
We understand that to some extent, antivirals also reduce the risk of long COVID.
We also understand that reinfection raises the risk of long COVID.
So all of that understanding should feed into some optimism that we've made some progress.
I think the major, major sort of a – we note lack of progress in clinical trials.
As I indicated, they're too slow and too small to yield definitive answers.
And really, for the person who is hurting from long COVID, they need that treatment yesterday.
And while we've made progress in understanding the biology and epidemiology
of long COVID, we definitely need trials at scale that match the urgency of
the problem. Madhuk Prasad.
Yes, I'd like to just reiterate what the other witnesses have said,
that there's a lot that we understand about the biology.
We do know that the clinical trials have been slow.
There are some instances in which there have been issues with some of the treatments
that are recommended for long COVID.
In the early days, exercise was often recommended, even for patients without
testing for post-exertional malaise.
So I think right now we're really in a phase where there are about,
I think, there are 12 trials that are registered in clinicaltrials.gov that
are working on experimental medicines.
And I think that we really need investment in this direction to really identify
treatments that are working for patients.
Dr. Walker. welcome. Yeah. To reiterate what many of the last panel mentioned,
we've seen a lot of these patients that have really not been validated by their
primary care providers or subspecialists.
And that's because in our illness script as physicians, when we see a normal
physical exam, we see a normal diagnostic workup, we're left with,
oh, it seems like everything's okay. And clearly it's not.
And so just to reiterate, understanding the pathobiological mechanisms not only
helps us target medications, helps us understand the disease better,
also provides credence to this disease.
We can now point to something. This is a real disease.
It cannot be refuted. There is scientific evidence of this.
And so I think that's something that's really exciting that gives us hope.
But again, it gives us targets that we can use in drug trials.
I am assuming that my time is running out.
I'm assuming that all of you believe that the federal government has got to
play a much more active role with substantial sums of money for research,
development, clinical clinical trials, et cetera, is that correct?
Absolutely, yes. No doubt. All right.
Senator Cassidy. I will defer to Senator Murkowski.
Thank you, Mr. Chairman. Thank
you, Ranking Member. Thank you all for your testimony here today. Dr.
Harkins, I want to ask a question related to those who are struggling with long COVID in rural areas.
As you know, my state is pretty rural.
In addition to extraordinarily rural, we are also home to over half of our country's
federally recognized tribes.
And we got about 80% of our communities that are not on a road system.
So access to care is always a challenge. But you had raised that recent CDC
data marks more than 5,000 deaths from long COVID.
And while long COVID death rates varied by race and ethnicity,
they were the highest among American Indians and Alaska Natives.
So I'd ask if you are aware of any research efforts that have been focused specifically
on American Indians, Alaska Native population.
Um, and, and I, I appreciate that it may be that the challenge has just been
that access to that care, whether for, for diagnosis,
for, for any level of, of ongoing care, um, may have challenged it.
Um, but if you can speak to any research efforts that you're aware of,
and then what your recommendations for ensuring that, um,
just more of the marginalized population, specifically in our rural communities,
receive the diagnosis and the follow-on treatment with regards to long COVID?
Yes, thank you for your question.
In New Mexico, also a very rural state with a large population of Native American as well,
we don't have a very specific trial or focus just on our our American Indian
and Native Alaskan population.
And I think historically maybe we have not done well with research in this population.
I think building a better partnership with our indigenous tribes and other tribal
communities to want to help and share and listen to their input as to what is
needed for clinical trials and other things in their community.
I think, you know, they have to drive miles and miles and miles to come to a center.
Or they can't drive at all. Or they can't drive at all, or they don't have money for gas.
Exactly. And there's also the distrust of the research system.
And I think coming to them, going to their communities in a partnership and
maybe talking with them or getting the other folks to at least listening,
listening and understanding what is needed and how can we encourage their participation.
So let me ask about...
About the opportunities through telehealth.
You had highlighted HRSA's telehealth technology-enabled learning program initiative
to help train local providers to identify patients with long COVID and then
to work with the coordination.
In Alaska, clearly, our community health centers are a critical component of our healthcare system.
They really played a very key role in addressing the COVID pandemic.
Can you share any examples of how recover grantees can use technologies in perhaps
new or different ways to advance best practices,
but really to allow for increased access to these clinical services?
Services, again, through partnerships, because the distances aren't going to get any closer.
If you don't have roads, to your point, the ability to fly is cost prohibitive.
So we're talking about ongoing access and other partnerships through perhaps
telehealth and others in our our community health centers. Sure.
You know, through our Project ECHO program, we reach many providers and trying to educate them.
But I think also we need to have access for patients to actually visit with
physicians in a multidisciplinary COVID clinic.
That's going to to take a lot of other work to do, but I think having education,
broadband technology also is an issue, getting that to the patient homes.
But I think setting up regional centers where.
Potentially the primary care provider that is in that community can be a partner
in the learning loops and then being able to understand the diagnosis and then
take that to their patient.
So I think that telehealth is really going to be the answer for educating the
providers that can then bring the treatments and recommendations to their patients
in their communities that are very rural.
So that the provider is the treater and the patients don't have to come to the
bigger academic center. Thank you, Mr. Chairman.
Thank you. Senator Baldwin.
Thank you, Mr. Chairman. And I want to thank this panel of witnesses.
I also want to thank the previous panel of witnesses for coming here,
for telling your stories, and keeping this front and center.
We have to do that. Thank you.
With zero FDA-approved medications for people who are suffering from long COVID,
we just know people are suffering, and we have to increase the sense of urgency.
I want to ask a couple of specific questions. As several of our witnesses today
have noticed, it's vital that we continue to support research into our long COVID.
To better understand, prevent, and treat the disease. these.
Congress has previously allocated $1.15 billion to fund NIH research on long
COVID through a multi-pronged research network.
However, I know that NIH has received critical feedback regarding its approach to this research,
including the fear that it may not deliver any meaningful treatments to people
suffering from long COVID.
So I want to ask a couple of you to describe any concerns you might have with
the NIH RECOVER program and highlight the possible opportunities for oversight
and accountability within this program so that the NIH can better respond to
the needs of patients with long COVID.
And I want to add just a little bit to, you know, Dr.
Harkins, you talked about one approach is to looking at clusters since this
is multi-system On the other hand, Dr.
Alali, you talked about an institute for a greater number of infection-associated
chronic illnesses that are complex and multisystemic in nature.
And so it's kind of like you're taking it apart, you're putting more together.
I just want to hear a little bit more about where you would take that.
So Dr. Harkins and Dr. Al-Ali.
Thank you. I think the recover initiative is really trying to gather data and
follow patients and really understand the disease.
We want to be able to do treatments, and the treatment trials are taking a while
to get going, yes. But the problem is one treatment isn't going to be available
to fix everything, right?
So all of these patients, we need to find out, well, what is driving the post-exertional malaise?
What are the drivers for the respiratory and the cardiac complications?
And then how can we devise research treatment plans for both of those?
Because doing one thing and then having everybody join in, you're not going to see a result, I think.
You have to have it very clarified for your specific patient population to see a benefit is my feeling.
That's going to take time, unfortunately, and that's what everyone is frustrated with. Right.
I think the major question that we need to really solve is why acute infections
that we've trivialized for centuries, for centuries we trivialized acute infections,
why acute infections in some cases lead to chronic disease.
I think this pandemic is telling us, it's giving us really clues that,
you know, SARS-CoV-2 infection in most people, they do just fine,
but some people succumb to long COVID.
And then we look back in the history books, it actually happened after the flu.
It actually, you know, look at the ME-CFS, it's also thought to be driven by
viral illness. So I think the solution here is to try to really more deeply
understand why acute infections lead to chronic disease.
This requires really a comprehensive approach to really understand the mechanisms
of why viruses that actually produce acute infections lead to chronic disease,
understand the epidemiology, and also dissect therapeutic pathways.
This really requires an all-hands-on-deck situation and a really broad,
comprehensive approach, interdisciplinary approach that should be solved,
in my view, in the form of a new institute to tackle this issue. true.
This will not only help you address the issue of long COVID,
it will also help us solve the puzzle of ME-CFS and all other infection-associated
chronic conditions that have been ignored for decades and help us prepare for the next pandemic.
So one thing, one certainty in life is that we're going to be hit with another pandemic.
We just don't know if this is going to be five years from now,
10 years from now, or 30 years from now.
And it is important that we learn the lessons from this virus today to really
face the rough waters of future pandemics.
We would be We all in failure if our children face a future pandemic and get
hit with another long something, long virus, you know, 2020,
2030 or something, and they don't know how to treat it.
That would represent our collective failure.
And we really, really need to understand this now. And I think this is really
the time is now to understand infection associated chronic diseases.
Thank you. I ran out of time for my question for Dr. Walker,
but maybe I'll stick around and see if we can get another round.
Senator Cassie?
Oh, thank you. Oh, my goodness.
All right. So last year, we came together to provide $10 million in new funding
for the Agency for Healthcare Research and Quality's patient-centered coordinated
care for those living with long COVID, including new care models.
I was proud to work with colleagues to continue this funding in our proposed
Senate fiscal year 2024 bill.
And I certainly want to work with our colleagues in the House to get this over the finish line.
But Dr. Walker, can you talk about the importance of that AHRQ funding for long
COVID and the gaps that would exist without it? Yeah, thank you so much for that question.
Thank you so much for advocating for that funding.
I think it will be really essential in being able to expand the care that we
provide to long COVID patients.
So just to give a context, it is a multisystemic, complex disease,
and primary care physicians at this stage are unprepared to manage this novel disease.
It's an extensive workup for these patients and labor intensive.
Of... So these patients, as you've already heard, are oftentimes passed back
and forth between subspecialists because of this most systemic nature.
And I've heard of
patients seeing 30 subspecialists before they make it to a long COVID clinic.
Yeah, that's absolutely true. And so these extensive diagnostic workups that
come with this as well is burdensome for the patient, burdensome for the healthcare
system, and long COVID clinics are equipped to see these patients.
The problem with that is we're rare. Many of us are closing doors.
So the clinics are dwindling. So having the support is really important,
especially since we received these referrals and we've become pretty saturated
in our clinics to be able to see these patients.
So this initiative is a five-year initiative that funds nine long COVID centers
of excellence across the U.S.
So it has a demographically distributed population.
And what we're able to do with it is really expand care.
So we're able to hire additional staff, care coordination staff.
So it's really a person-centered coordinated care model.
We're very interested in the patient voice and have patient advisory committees.
We are engaging with the community and community allies.
So we know what the community feels about long COVID, how we can increase community-based
referrals and that we're meeting the needs of the community.
And it also includes a component where we have an iterative evaluation component,
again, with the patient voice so that we can continue to improve these care
models for long COVID and then hopefully guide policy.
And then the last thing I'll mention is because I mentioned the primary care
physicians and just a lack of understanding of long COVID, there's a very robust
plan in place to provide peer education through ECHO,
through primary care roadshows, through webinars, and multiple education series.
So, we're hoping to eventually decentralize the care of long COVID in the long run.
Again, if 20 million individuals in the U.S. have long COVID,
they can't be cared for in only these long COVID centers.
All right, Chairman, thank you so much. Let me, again, if you hear frustration, it's my voice.
It's again, because one of my very closest loved one has been incapacitated for two years.
We're one of those families where our loved one has seen 30 doctors.
And if you can find, there are not many long COVID clinics around.
But let me add my frustration with NIH. NIH. As Senator Baldwin pointed out,
we gave them over a billion dollars December of 2020.
They've been focused on, as I call it, forming committees and praying about
it, but they're focused on risk factors and causes as opposed to diagnosis and treatment.
I really, you know, for Senator Sanders' team, I think we should have NIH come
in, and I'm not pointing, I am pointing a finger, but it's their processes.
They're not streamlined.
I think you give somebody a billion dollars, we could have some studies done
on diagnosis and treatment.
And I would suggest that this committee is maybe giving this type of money more
to BARDA, which seems to be more streamlined, more focused on working with the private sector.
We keep repeating these same mistakes. We can't take two years just to get geared up.
So I hope we come back with NIH. We We talked about funding BARDIS somehow, some way.
At its core, long COVID is a vascular disease.
It's about immune dysfunction. It's almost like an autoimmune reaction gone
crazy, and the spike protein's the pathogen. We know that.
And from the doctors on the cutting edge in the private sector,
they're getting cytokine panels and coagulation workups, plasminogen activation
inhibitors, fibrin monomer dimers.
There's micro clots going on too small for us to see on the typical scans that we would use.
So those are the types of things I wish we were studying to say, well, here's normal.
Here's what's happening in COVID patients, those types of things. Dr.
Al-Ali, are you doing any of those types of blood work, these cytokine panels, that type of thing?
Not in my lab, but I definitely endorse the idea that we need to find treatments
as soon as possible. That's really very important.
The research enterprise should be oriented to address the problems that people
care about most, which is really treatment. I definitely agree.
Right. But it would be great in the primary care setting if there was a long COVID panel.
Like a hepatitis panel, we need a long COVID panel. panel, and then our primary
care doctors could identify this and say, yes, indeed.
And then maybe based upon that, we decide if we're going to use some off-label
drugs like Plaquenol, or maybe we're using acyclovir because we've stirred up
the Epstein-Barr virus, that type of thing as well.
Does anybody in the panel have any experience using off-label drugs to treat this with some success?
Plaquenol is what comes to mind to me. Dr. Walker, you're kind of shaking your your head, yes?
Yeah, I mean, there's some evidence for medications like low-dose naltrexone
that have already been used in the ME-CFS population.
There's some observational data out of Stanford using this medication.
It doesn't work for everybody, but it is very beneficial for some.
And I think that we need to focus not only on curative treatments,
because of course that makes sense, but as you heard the panel say today,
we just need medications that will cause some relief of symptoms as we're trying
to learn more about this disease and find treatments for it.
Dr. Ali, are you using any medicines off-label with success?
I would endorse publicly, but
again, the way we know about what works and what doesn't is to do trials.
I mean, that's really how we know systematically what works and what doesn't, right?
Anecdotally, there are a lot of things that people say that these things might
work, but I think we need to accelerate trials so we actually find out what works and what doesn't.
So, I'm all for the longitudinal studies, and of course, you know,
those take years as opposed to days.
I think that we could even start with just some retrospective studies in the
machine learning to say, okay, what patients have been given Plaquenil?
What patients have been given acyclovir? Which one is it, Neurotin?
Low-dose naltrexone. Naltrexone as well. Some of those, just to see.
And yes, I'm all for the longitudinals, but desperate times call for desperate
measures, and doctors can't be persecuted for,
you know, I use off-label medicines every day, but it It seems like if you use
off-label medicines in COVID, you're going to go to COVID hell and be censored.
So I don't get what the double standard is all about. Senator, we're on the same page.
We actually believe very firmly in the value of observational research to really
inform a lot of our policy discussions.
But at the same time, we also need to really accelerate the conduct of trials
so we actually definitely know what works and what doesn't.
And those are complementary approaches. And we definitely – most of my lab really
runs on observational research, and I definitely endorse the idea that observational
research can teach us a lot.
And as a matter of fact, it has taught us a lot about COVID and long COVID in the past four years.
Most of what we know is from that line of research. So we're on the same page. Thank you.
Mr. Shipman, you're back. Thank you. Thank you.
First, thank you all for – I haven't gone yet.
I thought you were wrapping up. No, I would never think such a thing.
Wouldn't even consider it without checking to my co-chair.
Thank you all for coming. Know how busy you are and how seriously you take this.
You've been, you really brought to light a number of different facets that haven't
really been considered.
I want to ask each of you, and we'll start with you, Dr. Ali. Yeah.
Do you think there's potential of directing artificial intelligence?
I mean, we've heard so many different novel cases, sets of symptoms in different
circumstances and all the different variables that go into the biotics of the
gut and we've all been hearing about.
Do you think AI is a potential, A, for in diagnosis, being able to get a faster
solution to diagnosis, but then also in terms of getting to some appropriate medications.
Absolutely, yes. So, AI can teach us a lot about the biology of long COVID,
why the virus with its current structure and evolving structure can actually lead to chronic damage.
You know, definitely leveraging technologies like AI to solve this problem is really important.
It can also help us identify therapeutic pathways and can really also sift through,
you know, the trillions of data bits that are available to us in the U.S.
To help us identify patterns and potentially also treatments at work.
So leveraging, this is an all hands on deck situation, leveraging technologies
like AI and actually the might of people who really, you know,
do very well and, you know, very advanced AI to help us solve long COVID is
going to be very, very important.
Definitely. Anybody want to add something to that?
That? Yes, I'd just like to add that systems like OpenAI that we see right now,
those are really successful because of the fact that we put everything on the
internet, all of our business, all the time, all the time.
And so the problem with EHR systems is we don't have all this data structured.
We don't all have it available in one place.
If I'm looking at patients in my system, I don't necessarily know every single
health center they've been to.
I don't know when they picked up their prescriptions. I don't know all of this information.
And so in order for observational systems to be able to leverage AI for this.
We need a better investment in the data and information that is available,
how it's centralized, how you're able to track and get a comprehensive picture for patients.
Absolutely. Anyone else?
I totally agree. I mean, our systems don't talk to each other,
so we don't have all of the basic information of what patients have tried, et cetera.
So AI has its limitations in that way.
But I think it could identify potentially agents that many patients are using
and then take that forward for trials.
I think there's the great possibility.
Dr. Wark, do you want to add anything to that? Yeah, and this is somewhat adjacent to that discussion.
But similarly, FDA and NCATS already support a platform that allows capture
of repurposed drug data of what people are using off-label and physicians.
And we can sort through this data to find medications that might be helpful
to be then deployed in randomized clinical trials.
And so not specifically AI, but similar use of this existing real-world data.
Yeah. Yeah. I think it does come back to what Dr. Matlick-Brown said in terms of N3C.
We got to get all the data connected and be able to look at without ever revealing
a patient's name, but understanding how many different patients have had these different symptoms,
have had these different conditions, have had microclots, whatever the circumstances
are, and begin to analyze that more carefully.
Again, I'll start with Dr. Ali.
Do you think we are going to get at other pandemics. There's no question.
For some reason, Congress doesn't seem willing to fund the basic preparation
to be prepared for that next pandemic, which we're still working on.
Well, I do believe we'll get there.
But should we also be looking at considering changes in some of the guidelines
we issued for transportation.
How many air changes we have in an elevator or in an an airplane,
whether the new air comes in high or comes in low, buildings,
how often the air changes.
Is that, now that we're beginning to understand this type of pandemic and knowing
we'll get another, shouldn't we be considering more carefully how we build things in the future?
Yes, yes. So investment in air filtration and ventilation air filtration systems
is going to be very, very important.
Updating building codes to actually require them is going to be very important.
Let me give you an example. We actually, you know, earthquake-proof buildings
for earthquakes that happen once every 50 years or 100 years.
We invest millions of dollars in making buildings earthquake-proof or seismically proof, right?
Why can't we do the same thing to really make sure that our buildings are proof
against natural hazards like airborne pathogens, right?
So this is very, very important. One of the lessons that we learned from this
pandemic is that pathogens could be transmitted in the air, like SARS-CoV-2 or airborne pathogens.
And one way to protect or to reduce the chance of transmission and infection
is to clean the air in indoor buildings.
And one of the pathways to do that is investment and updating building codes
to require better ventilation and air filtration systems.
I couldn't agree more. And think of all the auxiliary, the accessory health
benefits we would get from those kinds of investments.
Our study is demonstrating that actually kids perform better in schools when
they have better air filtration and air ventilation systems.
They actually perform better in schools. That's really been done.
And again, we do the same thing for earthquakes.
And in some instances, earthquakes don't have— With much less benefit. Absolutely.
Absolutely. I see all four of you nodding your head, so I think we can say we
have a consensus here in that.
I'm out of time, but I'll come back since I'm now sitting in for the chair.
I get to decide whether we keep you for a few minutes longer.
Promise to put it to use. Senator Cassidy. You give a man a microphone and all
of a sudden you can't control him.
Hey, thank you all. Thank you for what you're doing and for all of your physician
colleagues and researcher colleagues whom you represent. I really appreciate that. Okay.
So my questions, I've got a bunch of them.
First, I just want to make the point that there's been a lot of effort here,
a lot of discussion about the NIH
to do more to hopefully develop these therapeutics as rapidly as possible.
I will point out something which is counterproductive and which has been shown
to be counterproductive, which is the most frustrating thing,
which is the administration is pushing that if there are cures with NIH money,
that the federal government can march in and dictate whether or not the intellectual
property is taken if they don't like the price.
That has been shown in the past to inhibit investment by the private sector.
And it's very populist. It probably does well on a campaign trail.
It's going to be bad for this.
And I'm just going to make that point because we've made it before,
but maybe this is the time that will actually mean something to people to actually
promote development as opposed to promote a populist appeal. Next.
Dr. Harkin. A lot of conversation. Dr. Walker mentioned Project ECHO 2.
You're from the hometown of Project ECHO.
How effective has ECHO been in terms of transmitting?
What is the uptake among primary care providers logging on to hear from you or Dr.
Walker or whomever as to how to better manage these patients?
Thank you for the question. You know, we have over 100 participants in this
particular post-COVID primary care ECHO program that we're running.
Now, participants are sites or participants are individual physicians?
Individual participants and the majority are practitioners.
So, 100 different doctors? 800. 800. I'm sorry. Yes, 800. And so—.
What we're seeking are case presentations from these patients,
from the providers, but they were uncomfortable or not knowing how to diagnose
long COVID. Is it long COVID?
So we have done case-based presentations.
I get that, but I have limited time. So we have efficacy data where they feel
more comfortable. We are doing polls.
They can actually answer the questions. Now, yes, this meets a long COVID diagnosis.
Yes, this would be the next step to do. And as Dr. Walker, you had said you
need to decentralize the management of this.
Are you finding these roadshows and these ECHO programs decentralizing the management yet?
These are just being launched now as AHRQ was just funded.
I don't expect that we'll be decentralized soon. This is a five-year endeavor,
and I expect that we'll need to have that full five years, if not longer.
It's a very complex disease, but during these five years, there'll be a very
intensive capacity-building effort amongst primary care physicians within our regions.
Sounds great. Dr. Ali, let me just ask you because it begs to be answered.
We do know some of the path – I've been sitting up here reading my PubMed.
So we do know that there's different pathological mechanisms by which it is
theorized COVID would do this.
In some cases, it's immunologic dysregulation.
Other places, it's gut dysbiosis. In other cases, it's thrombi.
But there are specific treatments for each of those.
For example, one of our witnesses said that her daughter had been given a colonoscopy,
put on probiotics, which could be irritable bowel syndrome superimposed,
but nonetheless, it worked.
So I guess I'm a little bit, and I know there's an answer for this.
I presume the approach is, wait a second, here we have studies showing that
thrombi are probably involved.
And here, to the degree we can separate those two, it seems to be immunologic dysregulation.
And here's something else. And it seemed like there could be a therapeutic intervention,
even if not in a clinical trial, aimed on each of those.
Is that being done? And if so, what are the successes of this kind of personalized approach?
This is what gives me hope is that our understanding of the mechanisms of long
COVID has actually improved over time.
And we know that there's, you know, got dysbiosis.
We know that there are micro- Let me stop you, though, because,
again, I got limited time and he's now the chairman.
But we've had some of this information for a couple of years now.
And that's time enough for people like, for example, the GI doc who ended up
giving the patient the probiotics and making a positive improvement.
So to what degree has this information that we've had for two years been translated
by clinicians into different approaches, even if it's empiric?
Very, very poorly. I think the broader sort of provider community don't really
have a very... Okay, then go back to the long COVID treatment centers,
because we funded eight or nine of those. And so how are those doing implementing this information?
So those are currently treating people symptomatically, and some of them may
be trying different treatments according to different mechanisms.
But I think really the core issue here is that the only really way,
the only solid way we know treatment works is by doing RCTs or randomized controlled
trials. Oh, I get that totally.
On the other hand, I think as maybe you, Dr. Matlock-Brown, who said we could
have the real-world experience, sometimes a RCT is stimulated by,
hey, look at this. In this subset of patients, this really seemed to work. Now let's check it.
It isn't random by which you come up with a random contract.
And I think a lot of that anecdotal evidence and also the basic and mechanistic
evidence is informing the development of clinical trials.
I think the point, though, is that the number of trials that are now currently
planned or ongoing is too small and too slow to really yield definitive answers
in the time that we need them to.
Dr. Harkin, back to you. you. I've read, sitting here reading,
and apparently physiotherapy in some cases helps people with pulmonary disease
because it strengthens the diaphragmatic muscle and they can breathe better.
But we heard, you know, in some cases exercise actually exacerbates the underlying sentimentology.
How do you as a pulmonologist figure that out? Or is that an empiric too?
Well, you have to have a conversation with your patient and you have to really
understand what their limitations are.
There are several studies that show that pulmonary rehab do actually help patients,
certain select patients, with long COVID with better outcomes.
I think it has to be individualized and multidisciplinary.
You have people that help you breathe better. You have people that can help
you do a little bit of activity, whether it's resistive or etc.,
depending on what you can do at baseline.
You can't just have a one prescription fits all all patients with homecoming.
Yeah, so how do you differentiate that is my question. Now, how do you come
up with a person for whom gentle exercise will gradually strengthen and gentle
exercise will otherwise further exhaust?
Well, that is the difficult part, but it's really in trying to get a history from my patient.
What can they physically do day to day?
Are they getting better? Is this improving over time?
Maybe they are a person that could do this pulmonary rehab, but someone that
can't get out of bed because of severe
post-exertional malaise because of something they did the day before,
that's someone I'm not going to send to general pulmonary rehab.
I'm way out of time. Let me just say one more thing. Ms.
Beal, when she spoke, spoke of wishing to speak directly to her provider and
having that kind of therapeutic relationship of being able to look someone in
the eyes, not through a Zoom screen, but, and I've been there too.
And I just thank you all for being those who provide that face-to-face. With that, I yield.
Isn't it spectacular to have doctors in the United States Center who actually
know what they're doing and put in the time and the effort to to make that observation.
I want to have, I just have one more question.
When I was young and just learning, a friend talked me into helping him start
a community health center in Connecticut back in 1972.
So we just celebrated 50 years ago.
And way back then, the vision of community health centers, and several of you
touched on this, really was interconnectivity.
And we've come back to that again and again and again, the importance of interconnectivity.
And now we've got to go well beyond networks of community health centers. But.
Into larger, all-inclusive domains.
And I want to talk a little bit about the research and the interconnectivity.
Dr. Walker, the University of Colorado, like Emory, is one of the nine centers
doing this research on long COVID, the award grant funding.
How do you think it's best going to pull all that information together between
the nine different, different, we say foci, the focuses, nine different campuses.
Yeah, we actually had our kickoff meeting yesterday and it's going on today
as well. And so it was very interesting to hear the approaches everybody's taking.
I think what was tasked to us in the grant announcement was a pretty clear delineation
of what was needed for long COVID care and we all agreed with it.
So our approaches are actually quite harmonized. There's a fair amount of unity
in how we're We're going to approach multidisciplinary care,
addressing health disparities, how we're going to ensure that we're including
the patient voice and community engagement.
And so I think that these meetings will really be able to harmonize that.
We want to collect similar information for our programmatic evaluation so that
we are able to ensure that we're improving the quality of care in a way,
again, that's harmonized so that we can lead policy change on health care for long COVID.
Right. Does anybody else want to add anything to that in terms of how we take
these efforts around research that are regional and coalesce them?
I think this really needs a quarterback. You really cannot play a game and play
it well without a quarterback.
And this is when we talk about an institute that can bind or sort of integrate
all of this together to really help us move the ball forward.
This is what this is about. out.
You know, you can have a lot of things, you know, going on, but unless you have
really a coordinated approach, you're unlikely to move the ball really fast and really forward.
Dr. Harkins, Dr. Madeline Brown. I would just say that there needs to be more
sort of, I think, engagement of the kind of boots on the ground research that
you talked about in your initial testimony of,
you know, the people doing a lot of the work, being able to direct the research more.
I think better engagement also with patient advocates, many of whom are scientifically
trained. And so they're bringing both of those knowledge bases.
I'm thinking of the patient-led research collaborative. collaborative,
and I think also maybe having some meetings a few times a year where those of
us who are working on the different arms are actually getting together and talk.
This is the first time I'm talking to the other three panelists,
and so I think we need to be more kind of aware of what we're doing and figuring
the direction out together.
I agree. It has to be bi-directional. We have to learn from our patients,
our communities, and also the providers in a variety of research settings and clinical settings.
But I think moving forward, having more open engagement and data transfer and
being very transparent with the public as well as with the researchers as to
what's going on and how can we move forward.
Right. I think you all demonstrated that. I mean, we're going to make progress
on this by taking your individual curiosity and all your coworkers on this and then careful,
careful observation and then
figuring out how to take that and assimilate it from different groups.
Oops, again, I can't tell you how impressed I am that every one of you are talking
about the importance of talking to patients and just getting more and more and
more patient-based in terms of determining what the reality is,
but then also what the next step should be.
Uh, we're a little over time, so I'm going to cut it off here.
I would stay here, you know, I should take you all out and buy you lunch if
they didn't have me going to another meeting.
Um, but it really appreciate, cannot overemphasize, uh, how much I respect your
service and your willingness in such a complex, difficult, challenging circumstance
where people's lives are on the line.
You're at, you're on that line. You're out on the front line doing the hard
work. So we get to speak on behalf of the country, I think, to a certain extent.
On behalf of the United States, we thank you.
So that's the end of our hearing today. Again, can't emphasize how much we appreciate
the participation of our witnesses.
Thank you so much for making the time and the effort.
Any senators who wish to ask additional questions will have questions for the record.
They'll be due in 10 business days. Those questions due February 1st at 5 o'clock.
And finally, I'll ask unanimous consent to enter into the record 37 statements
from stakeholder groups outlining their priorities for addressing long COVID.
Motion? Aye. Yes. A claim, I guess we call that. Anyway, this committee stands adjourned.