[House Hearing, 117 Congress]
[From the U.S. Government Publishing Office]




 
                      UNDERSTANDING AND ADDRESSING

                       LONG COVID AND ITS HEALTH

                       AND ECONOMIC CONSEQUENCES

=======================================================================

                                HEARING

                               BEFORE THE

             SELECT SUBCOMMITTEE ON THE CORONAVIRUS CRISIS

                                 OF THE

                   COMMITTEE ON OVERSIGHT AND REFORM

                        HOUSE OF REPRESENTATIVES

                    ONE HUNDRED SEVENTEENTH CONGRESS

                             SECOND SESSION

                               __________

                             JULY 19, 2022

                               __________

                           Serial No. 117-94
                           

                               __________


      Printed for the use of the Committee on Oversight and Reform
      
      
      
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                       Available on: govinfo.gov,
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                             docs.house.gov
                             
                             ______                       


             U.S. GOVERNMENT PUBLISHING OFFICE 
 48-122 PDF           WASHINGTON : 2022 
                           
                             
                             
                             
                   COMMITTEE ON OVERSIGHT AND REFORM

                CAROLYN B. MALONEY, New York, Chairwoman

Eleanor Holmes Norton, District of   James Comer, Kentucky, Ranking 
    Columbia                             Minority Member
Stephen F. Lynch, Massachusetts      Jim Jordan, Ohio
Jim Cooper, Tennessee                Virginia Foxx, North Carolina
Gerald E. Connolly, Virginia         Jody B. Hice, Georgia
Raja Krishnamoorthi, Illinois        Glenn Grothman, Wisconsin
Jamie Raskin, Maryland               Michael Cloud, Texas
Ro Khanna, California                Bob Gibbs, Ohio
Kweisi Mfume, Maryland               Clay Higgins, Louisiana
Alexandria Ocasio-Cortez, New York   Ralph Norman, South Carolina
Rashida Tlaib, Michigan              Pete Sessions, Texas
Katie Porter, California             Fred Keller, Pennsylvania
Cori Bush, Missouri                  Andy Biggs, Arizona
Shontel M. Brown, Ohio               Andrew Clyde, Georgia
Danny K. Davis, Illinois             Nancy Mace, South Carolina
Debbie Wasserman Schultz, Florida    Scott Franklin, Florida
Peter Welch, Vermont                 Jake LaTurner, Kansas
Henry C. ``Hank'' Johnson, Jr.,      Pat Fallon, Texas
    Georgia                          Yvette Herrell, New Mexico
John P. Sarbanes, Maryland           Byron Donalds, Florida
Jackie Speier, California            Mike Flood, Nebraska
Robin L. Kelly, Illinois
Brenda L. Lawrence, Michigan
Mark DeSaulnier, California
Jimmy Gomez, California
Ayanna Pressley, Massachusetts


                    Jennifer Gaspar, Staff Director
                      Beth Mueller, Chief Counsel
                        Yusra Abdelmeguid, Clerk

                      Contact Number: 202-225-5051

                  Mark Marin, Minority Staff Director

             Select Subcommittee On The Coronavirus Crisis

               James E. Clyburn, South Carolina, Chairman
Maxine Waters, California            Steve Scalise, Louisiana, Ranking 
Carolyn B. Maloney, New York             Minority Member
Nydia M. Velazquez, New York         Jim Jordan, Ohio
Bill Foster, Illinois                Mark E. Green, Tennessee
Jamie Raskin, Maryland               Nicole Malliotakis, New York
Raja Krishnamoorthi, Illinois        Mariannette Miller-Meeks, Iowa


                         C  O  N  T  E  N  T  S

                              ----------                              
                                                                   Page
Hearing held on July 19, 2022....................................     1

                               Witnesses

Monica Verduzco-Gutierrez, M.D., Professor and Distinguished 
  Chair, Department of Rehabilitation Medicine, University of 
  Texas Health Science Center at San Antonio
Oral Statement...................................................     5

Katie Bach, Former Managing Director, Good Jobs Institute
Oral Statement...................................................     7

Hannah Davis, Co-founder, Patient-Led Research Collaborative
Oral Statement...................................................     8

Cynthia Adinig, Long COVID Patient and Advocate
Oral Statement...................................................    10

Written opening statements and the written statements of the 
  witnesses are available on the U.S. House of Representatives 
  Document Repository at: docs.house.gov.

                           Index of Documents

                              ----------                              

  * Annals of Internal Medicine about sequelae immunity baseline 
  findings of a long-term COVID; submitted by Rep. Green.

  * Letter from COVID-19 Longhauler Advocacy Project; submitted 
  by Chairman Clyburn.

  * Statement from Senator Tim Kaine; submitted by Chairman 
  Clyburn.

  * Questions for the Record: to Dr. Verduzco-Gutierrez; 
  submitted by Chairman Clyburn.

  * Questions for the Record: to Ms. Davis; submitted by Chairman 
  Clyburn


Documents entered into the record during this hearing and 
  Questions for the Record (QFR's) are available at: 
  docs.house.gov.


                      UNDERSTANDING AND ADDRESSING

                       LONG COVID AND ITS HEALTH

                       AND ECONOMIC CONSEQUENCES

                              ----------                              


                         Tuesday, July 19, 2022

                   House of Representatives
                  Committee on Oversight and Reform
              Select Subcommittee on the Coronavirus Crisis
                                                   Washington, D.C.

    The select subcommittee met, pursuant to notice, at 10:13 
a.m., in room 2154, Rayburn House Office Building, and via 
Zoom; the Hon. James E. Clyburn (chairman of the subcommittee) 
presiding.
    Present: Representatives Clyburn, Waters, Maloney, 
Velazquez, Raskin, Krishnamoorthi, and Green.
    Also present: Representative Pressley.
    Chairman Clyburn. Good morning. The committee will come to 
order.
    Without objection, the chair is authorized to declare a 
recess of the committee at any time.
    I now recognize myself for an opening statement.
    Our Nation has made tremendous progress in the fight 
against the coronavirus because of the powerful protection 
provided by widely available vaccines, treatments, testing, and 
other tools. Since President Biden took office, data shows 
coronavirus deaths have been reduced by 90 percent. The 
Administration's comprehensive pandemic response has shaped us 
to move beyond the crisis phase of the pandemic and focus on 
creating jobs, increasing wages, lowering costs, and taking 
other steps to help farmers emerge even stronger.
    Even as we celebrate these accomplishments and work to 
continue our progress, many Americans, unfortunately, continue 
to suffer from a condition known as Long COVID, defined as 
experiencing symptoms beyond the time period of one's initial 
coronavirus infection. For a portion of these Americans, the 
symptoms have been severe, including chronic fatigue, muscle 
and joint pain, shortness of breath, and cognitive impairment. 
Some people's symptoms have lasted since 2020 and show no signs 
of improvement. There is still much we need to learn about Long 
COVID.
    Researchers do not fully understand its risk factors, 
causes, and effects, which can manifest themselves in a variety 
of ways. Our Nation's scientists are working to develop methods 
to reliably diagnose Long COVID, and trials are underway to 
test new treatments. Today's hearing provides an opportunity to 
learn how we can support these research initiatives, guide 
healthcare workers, inform the public about Long COVID, and 
provide support to affected Americans.
    Researchers also have struggled to estimate just how many 
Americans have experienced and are continuing to experience 
Long COVID. An analysis by the Centers for Disease Control and 
Prevention of data collected by the Census Bureau over the 
first two weeks of June, estimated that 35 percent of American 
adults, who were ever infected with the coronavirus, 
experienced Long COVID. Nearly 1 in 5 of those who were 
previously infected were currently experiencing Long COVID 
symptoms at the time the survey was conducted. Some estimates 
are higher, but others are lower. Even if the lower estimates 
are the right ones, they still suggest that millions of 
Americans are experiencing this condition. It is not known what 
portion of those with Long COVID have experienced severe 
symptoms, but it is known that many report symptoms that 
interfere with their daily lives, making it more difficult to 
care for their families or fulfill the demands of their jobs.
    Earlier this year, the Government Accountability Office 
estimated that 1 million Americans have been pushed out of work 
due to Long COVID. Many of these impacted families lose 
necessary income and employer-based health insurance at a time 
when they need it most. This takes a toll not only on those 
directly experiencing Long COVID and their families but also on 
a broader economy.
    One study has estimated that the United States faces up to 
$3.7 trillion in economic losses from Long COVID, including 
approximately $997 billion in lost earnings from those who 
cannot work due to Long COVID and approximately $529 billion in 
increased medical spending. Communities of color have 
experienced a disproportionately high burden from the 
coronavirus, which has been compounded by longstanding health 
disparities and economic barriers.
    Although research into the impact of Long COVID on 
vulnerable populations is ongoing, the recent CDC data suggests 
that women are more likely to be diagnosed with Long COVID than 
men and that Black and Hispanic Americans are more likely to 
experience Long COVID than white Americans. It is crucial that 
we improve our understanding of Long COVID on these communities 
so that all Americans receive equitable care, fair access to 
resources, and the best health outcome possible.
    We are taking steps to better understand and address Long 
COVID and its consequences. Congress has provided the National 
Institutes of Health with more than a billion dollars for Long 
COVID medical research. The Biden-Harris administration has 
initiated a whole-of-government approach to address Long COVID 
and provide support for Americans suffering from the condition. 
The Administration has expanded access to Long COVID clinics 
across the country and bolstered health insurance coverage for 
Long COVID care.
    President Biden also directed the Department of Health and 
Human Services to ensure to issue the first ever interagency 
National Research Action Plan on Long COVID by this August, 
which will include strategies to help measure and characterize 
Long COVID in both children and adults, foster development of 
new treatments, and improve data sharing between agencies, 
academia, and industry researchers. These steps will help 
advance progress in prevention, diagnosis, treatment and 
provide greater support for affected Americans, considering the 
condition's disproportionate impact on different racial and 
ethnic groups and those with underlying disabilities.
    HHS, in conjunction with the Department of Justice, has 
also issued guidance specifying that Long COVID qualifies as a 
disability under the Americans with Disabilities Act. This is 
an important step in ensuring that Long COVID is appropriately 
treated by employees, as a disabling event it can often be, and 
providing workers the protections they need so we do not have 
to choose between a paycheck and their health. Despite this 
progress, millions of Americans experiencing Long COVID and 
their families are desperate for answers and support.
    Today's hearing will help clarify what is known about Long 
COVID, what is unknown, and what we can do to answer these 
critical questions. We already know we must take additional 
action to further accelerate research, increase workplace 
protections and accommodations, and ensure medical care 
treatment and benefits are accessible and affordable. I would 
like to thank our witnesses for joining us today and for 
sharing their expertise on what support and services we need to 
address this urgent public health and economic challenge.
    Before yielding to the ranking member, I now ask unanimous 
consent that Representative Pressley be allowed to participate 
in today's hearing.
    Without objection, it is so ordered.
    Now in the absence of Mr. Scalise, our ranking member, I am 
pleased to yield to Dr. Green for an opening statement.
    Mr. Green. Thank you, Mr. Chairman, and I want to thank our 
witnesses for being here today. I want to really appreciate 
your time and the energy it takes to prepare for a committee 
hearing.
    Today's hearing is on a medical phenomenon where 
individuals infected with COVID experience lingering health 
conditions that may very well be related to their COVID 
infection. As a physician, I know it is important that we 
examine this closely to determine the linkage of symptoms and 
the ailments to COVID-19 and how best to treat such conditions. 
Without a doubt, many illnesses and injuries can result in 
intermediate and long-term effects, whether it is a viral 
disease, physical injury, or traumatic events. Reported 
symptoms of Long COVID have ranged from persistent fatigue, 
respiratory problems, brain fog, and cognitive impairment.
    At this point, there is still much that we do not know 
about the cause, nature, and prevalence, and treatment of a 
course of this condition. This is especially true given the 
commonality of conditions such as fatigue, insomnia, anxiety, 
and concentration impairment, which may stem from a wide range 
of health conditions. And I am reminded of the challenge of 
determining the pathophysiology of chronic fatigue syndrome.
    In 2020, Congress approved $1.15 billion for the NIH to 
conduct research on the risk factors and causes of Long COVID. 
Research studies are ongoing, and hopefully, those will shed 
new light on the nature, causes, and possible treatment of 
long-term COVID. Long-term post-viral effects of COVID are a 
medical phenomenon that should be studied so that we can 
increase our understanding and ability to treat it. It is not 
an appropriate justification for yet another extension of a 
public health emergency.
    COVID is now endemic. It is an endemic disease, and we need 
to treat it as such. Most Americans, as well as much of the 
rest of the world, have long since accepted that reality, and 
it is time for our Federal Government to do the same. Just last 
week, the Biden Administration decided to extend the public 
health emergency declaration for another three months, and who 
knows if they will extend it beyond that. While there may not 
be good scientific or medical reasons to extend the public 
health emergency declaration, there are quite a few political 
reasons.
    Many of the Federal Government's pandemic-related waivers 
funding and temporary policy changes will end with the 
emergency declaration termination. For example, the public 
health emergency declaration prevents states from removing 
millions of ineligible recipients from their Medicaid rolls. As 
a result, it is no surprise that Medicaid enrollment has 
skyrocketed, going from 71 million to 95 million in just two 
years. Thirty percent of the Nation is now on Medicaid, even 
though many of these new additions no longer qualify for 
Medicaid because the only ways states can remove someone under 
the emergency is if they die or move out of the state.
    In a lot of cases, millions of these Medicaid recipients 
have returned to work and have incomes above the Medicaid 
level4, and they would otherwise be getting health coverage 
through their employer instead of through the state. That is 30 
percent of all Americans because the Federal Government is 
telling states that they can't enforce crucial eligibility 
requirements in their Medicaid programs during the public 
health emergency as a condition of additional funding. Keep in 
mind that Medicaid's improper payment rate is around 20 
percent.
    It is irresponsible and disingenuous for the Biden 
Administration to perpetually extend the public health 
emergency like it did just last week. It is long past time for 
this Administration to recognize that COVID has become endemic 
like all coronaviruses, and we can't keep governing with 
emergency policies indefinitely. Americans understand that we 
are past the emergency phase of COVID, and it is time for the 
Nation to return to normal.
    Mr. Chairman, I would also like to seek unanimous consent 
to enter two articles into the record that I will discuss 
during my question period. The first is a study from the Annals 
of Internal Medicine about the sequelae and immunity baseline 
findings of a long-term COVID. I would like to enter that, if I 
could, in the record.
    Chairman Clyburn. Without objection.
    Mr. Green. The second document that I would like to enter 
is from a group of physicians who have determined treatment 
mechanisms and modalities using FDA-approved treatments for 
other conditions. I will talk about it when I get my 
opportunity for questions and this mechanism that they are 
using as external counter-pulsation therapy. I would like to 
enter that as well.
    Chairman Clyburn. Without objection.
    Mr. Green. Thank you. Thank you, Mr. Chairman.
    I look forward to our witnesses' comments.
    Chairman Clyburn. I thank Dr. Green for his statement. I 
would like to welcome today's witnesses. Dr. Monica Verduzco-
Gutierrez is a professor and chair of the Department of 
Rehabilitation Medicine at the University of Texas Health 
Science Center at San Antonio. Dr. Verduzco-Gutierrez helped 
establish and now leads two Long COVID recovery clinics, where 
she treats patients suffering from Long COVID. Katie Bach is an 
expert on labor, job quality, and low-wage work. Most recently, 
she authored a report on the adverse effects of Long COVID on 
the labor market. Ms. Bach has previously served as the 
managing director of the Good Jobs Institute, founded by the 
Massachusetts Institute of Technology.
    Hannah Davis is one of the founders of the Patient-Led 
Research Collaborative, an organization that facilitates 
patient-led and patient-involved research and advocates on 
behalf of Long COVID patients. Ms. Davis has offered several 
studies on Long COVID and has been a Long COVID patient since 
March 2020. Cynthia Adinig became an advocate for those 
suffering from Long COVID, particularly in marginalized 
communities, after becoming infected with the coronavirus in 
March 2020 and subsequently developing severe Long COVID 
symptoms. Ms. Adinig has shared her story in several national 
publications.
    Will the witnesses please rise, those present, and all 
please raise your right hands? Will you please rise, and those 
joining us virtually, please raise your right hands.
    Do you swear or affirm that the testimony you are about to 
give is the truth, the whole truth, and nothing but the truth, 
so help you, God?
    [A chorus of ayes.]
    Chairman Clyburn. Let the record show that the witnesses 
answered in the affirmative.
    Without objection, your written statements will be made 
part of the record.
    Dr. Verduzco-Gutierrez, you are recognized for five 
minutes.

STATEMENT OF DR. MONICA VERDUZCO-GUTIERREZ, PROFESSOR AND CHAIR 
  OF THE DEPARTMENT OF PHYSICAL MEDICINE AND REHABILITATION, 
    DIRECTOR OF COVID RECOVERY CLINIC AT UNIVERSITY HEALTH, 
             UNIVERSITY OF TEXAS HEALTH SAN ANTONIO

    Dr. Verduzco-Gutierrez. Chairman Clyburn, and honorable 
members of the Select Subcommittee on the Coronavirus Crisis, 
thank you for inviting me to speak today. My name is Dr. Monica 
Verduzco-Gutierrez. I am professor and chair of Rehabilitation 
Medicine at the University of Texas Health Science Center at 
San Antonio. I am approaching my testimony from the perspective 
of a physical medicine and rehabilitation physician who 
specializes in brain injury medicine and who now runs two COVID 
recovery clinics in San Antonio, Texas. Before the pandemic, 
the patients I cared for had brain injuries or strokes, but now 
I care for an expanding new population of patients with Long 
COVID, and I will be asking you to ensure they get the access 
to care and research that they need.
    In August 2020, I saw my first patient with Long COVID. 
Many of them are frontline workers and public servants. Almost 
500 patients later and each one has their own battles with Long 
COVID: patients who have developed an autoimmune disease, who 
can't stand up for two minutes without their heart rate going 
up the roof, who have fatigue 100 times worse than when they 
had cancer, marathoners who can't run, healthcare providers who 
can't physically or cognitively return to the bedside. And no 
matter the variant, no matter the severity, no matter the age 
or prior health of the patient, COVID is impacting millions of 
Americans.
    And still, since almost two years ago, there is not a way 
for me as a physician to diagnose Long COVID based on a 
physical exam, bloodwork, an EKG, or a scan, and the patients 
keep coming. Some patients are waiting upwards of six months to 
be seen. For some of them, when the day of their appointment 
arrives, some don't make it, not because they got better, but 
because they got worse. They lost their job and healthcare 
insurance, or they are so disabled, they can't get out of bed. 
I am told it is a full-time job using all their resources just 
to feel OK. So many cannot work.
    I see patients who are both affluent and those who are in 
the safety net system. The most vulnerable with the most 
barriers to access to care will be at increased risk of 
disability and poor outcomes. As the popular song says that you 
might have heard a few months ago from your grandkids or 
children, ``We don't talk about Bruno, and we don't talk about 
the brain with COVID.''
    Research is emerging that COVID-19 can cause immune-
mediated neurovascular injury and, therefore, neurologic 
complications. When disease-caused brain inflammation goes 
undiagnosed, there can be huge consequences. Many of my 
patients have overlapping symptoms with those seen after brain 
disease: memory loss, concentration problems, insomnia, 
headaches, dizziness, tremors, dysautonomia, anxiety, PTSD, and 
suicidal thoughts. Some have even experienced rapid dementia.
    I have collaborated with my local experts at U.T. Health 
San Antonio's Biggs Institute for Alzheimer's and 
Neurodegenerative Diseases. The institute is now a National 
Institute on Aging designated Alzheimer's disease research 
center, 1 of 33 nationally and the only one we have in Texas.
    I came from a very humble background in South Texas, but I 
went into medicine for the same reason you went into public 
service. We are here to help people, all people. My national 
society, the American Academy of Physical Medicine and 
Rehabilitation, has developed a host collaborative of 40 
clinics. We treat patients around the country and in some V.A.s 
as multidisciplinary teams. We take hours with patients and 
have published clinical guidance statements, but we are seeing 
enormous resource strains. Action needs to be taken to support 
the healthcare work force for these clinics along with the 
research and the treatments.
    We need to reconfigure our approach to post-viral diseases 
that are historically underfunded. We need to talk about post-
viral illnesses. We need to talk about the perfect storm of 
brain inflammation and an immune system gone awry. And we need 
to study the overlap of people with myalgic encephalomyelitis, 
chronic fatigue syndrome, and other post-viral illnesses. This 
is a public health crisis.
    I would choose this path as a physician 1,000 times over. 
As I advocate for patients with Long COVID, I can only do so 
much as I see one at a time, but you can help more. 
Congressional action is needed to ensure that individuals with 
Long COVID can access the care they need. Pending legislation 
is there--treat for Long COVID Act, CARE Act, Cures 2.0 Act, 
COVID-19 Long Haulers Act--would address numerous hurdles.
    Thank you so much today for this opportunity, and I will be 
happy to answer your questions.
    Chairman Clyburn. Well, thank you, Dr. Verduzco-Gutierrez.
    Dr. Verduzco-Gutierrez. Perfect.
    Chairman Clyburn. Thank you very much. The chair will now 
hear from Ms. Bach. You are now recognized for five minutes.

 STATEMENT OF KATIE BACH, FORMER MANAGING DIRECTOR, GOOD JOBS 
                           INSTITUTE

    Ms. Bach. Good morning. My name is Katie Bach. I am a non-
resident senior fellow at the Brookings Institution, where I 
have been writing on the labor market impact of Long COVID.
    Despite being two-and-a-half years into the pandemic, we 
still know far too little about Long COVID: why people stay 
sick, how long they stay sick, or what the impact is on their 
lives. Yet we are gaining an understanding, albeit incomplete, 
of the economic impact of Long COVID. Specifically, it is 
somewhere in the neighborhood of 4 million Americans are not 
working due to Long COVID. Today, I will explain that number, 
give a brief sense of the overall economic impact of the 
disease, and discuss mitigation measures.
    So first, to understand how many people are out of work 
with Long COVID, we need to know how many people have it. Last 
month, the Census Bureau's Household Pulse Survey added four 
questions on Long COVID prevalence and found that about 8.1 
percent of working-age Americans currently have Long COVID. 
That is about 16.4 million people, and I want to note that a 
recent Federal Reserve Bank of Minneapolis study corroborates 
this figure using longitudinal survey data. But not everyone 
with Long COVID will leave work or reduce their hours. Mild 
symptoms, employer accommodations, or sheer financial need can 
keep people employed. But in many cases, Long COVID does impact 
work, and studies on the percentage of long haulers whose work 
hours are impacted vary substantially, from about 25 percent to 
65 percent. So using a very conservative estimate at the 
absolute lower end of that range gives us about 4 million full-
time equivalent workers out of work due to Long COVID.
    To give a sense of the sheer magnitude of that number, that 
is about 2.4 percent of the U.S. employee population. 
Unfortunately, this number appears likely to increase. The most 
compelling study I have seen on vaccines in Long COVID suggests 
that vaccines reduce the risk of Long COVID by only about 15 
percent. And while we don't yet know definitively the Long 
COVID risk of repeat infections, a recent study found that 
every repeat infection does increase the odds of long-term 
health consequences of COVID-19.
    So as we see more infections and more reinfections, we are 
likely to see more Long COVID cases. And to put this in 
perspective, consider the economic cost of just the lost 
earnings of long haulers. This does not include lower 
productivity of people working with significant healthcare 
costs incurred by patients, cost productivity of caretakers. So 
just the loss earnings of the long haulers is about $230 
billion a year, given the U.S. average wage. And I will just 
note that this ties almost exactly to the figure that we heard 
the beginning, the 1 trillion figure. So if the Long COVID 
population increases just 10 percent each year, by 2030, we 
will be incurring a lost wage cost of about $500 billion a 
year.
    So to mitigate the economic drag of Long COVID, 
policymakers should support five interventions. First, as we 
just heard, we need better treatment and prevention. We need 
better research to inform better and more accessible options. 
Second, we need universal access to paid sick leave. Currently, 
about 30 million private-sector workers do not have any form of 
paid sick leave. That means they are more likely to go to work 
sick and spread COVID-19, which leads to more reinfections and 
more Long COVID.
    Third, we need access to Social Security Disability 
Insurance benefits. Reports suggest that Long COVID patients 
are struggling to secure approval for SSDI. To change that, 
Congress could expedite the approval process for Long COVID 
patients, make it easier for those patients to secure approval, 
and critically waive the 24-month waiting period for Medicare 
benefits for SSDI recipients so that these people can access 
care. Fourth, we need improved employer accommodation. One of 
the paradoxes of the pandemic is that while the number of 
disabled Americans has risen significantly, the share of 
disabled Americans working has also increased. That is likely 
because of the shift to remote work, and it is a testament to 
the power of employer accommodations to keep people productive.
    Finally, and critically, we need better data collection. To 
fully assess the labor market impact of Long COVID and to track 
the efficacy of interventions, the Bureau of Labor Statistics 
and the Census Bureau should introduce questions about Long 
COVID's impact to the HPS as well as to the current population 
survey.
    I thank the subcommittee for the opportunity to testify 
today, and I look forward to hearing your questions.
    Chairman Clyburn. Thank you, Ms. Bach. We will now hear 
from Ms. Davis. Ms. Davis, you are recognized for five minutes.

  STATEMENT OF HANNAH DAVIS, CO-FOUNDER, PATIENT-LED RESEARCH 
                         COLLABORATIVE

    Ms. Davis. Thank you. My name is Hannah Davis, and I am a 
co-founder of the Patient-Led Research Collaborative.
    I got COVID in March 2020. Two years later, I still have 
cognitive dysfunction, memory loss, nerve damage, clotting 
markers, immune system dysfunction, dysautonomia, which is a 
dysfunction of the autonomic nervous system, and ME/CFS, a 
disabling complex neuroimmune condition. I still have 
difficulty driving, reading, and walking, and I still have not 
recovered. Before I got sick, I worked in artificial 
intelligence, but I haven't been able to return to that kind of 
work. I am considered a mild case by every definition.
    We know a lot about Long COVID. It's a complex biomedical 
condition spanning multiple organ systems, happening after 20 
percent of COVID cases. Research to date has found microclots, 
poor cerebral blood flow, dysfunction of blood vessels, ongoing 
immune dysfunction, disruption to the blood-brain barrier, 
connective tissue issues, and hundreds of other findings. Major 
theories about Long COVID's cause include viral persistence, 
clotting issues, neuroinflammation, immune dysregulation, 
microbiome changes, connective tissue damage, and 
hypermobility-related issues, autoimmunity, or a combination of 
these.
    Last month the U.S. Census released data showing an 
estimated 7.5 percent of all U.S. adults currently have had 
Long COVID for at least three months. Women and 
socioeconomically disadvantaged patients are most at risk, 
though every demographic is affected. Not being able to rest 
increases the risk and severity of Long COVID, which means 
people without appropriate work accommodations and those who 
must continue household or caretaking labor are at increased 
risk, as is anyone without documentation of a COVID test who 
cannot substantiate or does not know their need for rest.
    Lack of public education has led to many misunderstandings 
about what Long COVID is. Seventy-six percent of cases happen 
after a mild onset. Many did not have respiratory symptoms or 
low oxygen levels. Many people assume Long COVID is a 
continuation of COVID's acute symptoms when it is a new onset 
of multisystemic symptoms. A delay of weeks or months often 
happens between COVID onset and Long COVID and is more likely 
in younger adults. Long COVID can happen after reinfection in 
those who fully recovered from their first infection. 
Vaccination slightly reduces the risk of Long COVID, but it 
still happens often in fully vaccinated people with one study 
showing nine percent of triple vaccinated people got Long COVID 
after Omicron BA.2.
    Over half of Long COVID patients develop ME/CFS, 
dysautonomia, or both. ME/CFS is one of the world's most 
disabling illnesses with a quality of life worse than end-stage 
renal failure, cancer, and stroke. Seventy-five percent of 
people with ME/CFS can't work, and 25 percent are bed bound. 
Only five percent recovered.
    Consistent abnormal findings in ME/CFS include T-cell 
exhaustion, mitochondrial dysfunction, deformed red blood 
cells, exercise intolerance, altered brain function, and 
reactivated viruses. Only six percent of med schools fully 
teach post-viral conditions, like ME/CFS, and few providers and 
researchers are familiar with them. There are two dozen ME/CFS 
experts in the U.S., but little collaboration with our funding 
them, and we are wasting time reinventing the wheel with 
research exploring hypotheses that were disproven decades ago. 
Similarly, many providers and some Long COVID clinics don't 
know that outdated treatments, like graded exercise therapy, 
can cause patients with ME/CFS to worsen and become bed bound. 
Misconceptions around PCR and antibody tests have caused issues 
in research and care. These tests are often required for sick 
leave, entry into Long COVID clinics, healthcare, and 
participation in research.
    PCR tests have high false negative rates, however, and are 
less accurate in women and people under 40. There is also 
widespread misinformation that everyone who gets COVID makes 
antibodies, but a quarter of people don't make detectable 
antibodies, and others lose them over time. Both scenarios are 
more likely in women and those with initially mild illness. 
Additionally, multiple studies show a lack of antibody creation 
may actually be a feature of Long COVID and can be used to 
predict Long COVID. This information is not widespread, 
however, and many studies include antibody-negative Long COVID 
patients and control groups, leading to inaccurate results.
    Long COVID must be considered in every step of the COVID 
response. It has already impacted our work force. Many people 
with Long COVID can't work or need reduced hours, and struggle 
to apply for disability benefits. The financial impact is 
devastating and cannot be overstated. Long COVID will destroy 
our economy and disable a huge percentage of our society if we 
do not decrease new cases and prioritize a cure for existing 
ones.
    We need eight immediate actions: an urgent public 
information campaign on Long COVID to explain that it happens 
after mild cases and requires immediate pacing and rest; 
prevent transmission, including through mask mandates and 
widespread ventilation; provide paid leave to rest during acute 
COVID; reform SSI and SSDI to shorten processing times, 
increase benefits, remove waiting periods, update asset limits; 
and provide free legal assistance to those applying; provide 
financial assistance to the millions of long haulers unable to 
pay their daily costs of living; fund current post viral 
experts and let them lead Long COVID research; expedite and 
fund clinical trials, including anticoagulant therapy, 
antivirals for both COVID and reactivation, like EBV, and 
trials for ME/CFS and dysautonomia, including mitochondrial 
treatments, IVIG, and connective tissue restoration; and expand 
and improve clinical care, including education on ME/CFS and 
dysautonomia.
    Thank you.
    Chairman Clyburn. Thank you very much, Ms. Davis. We will 
now hear from Ms. Adinig. You are recognized for five minutes.

  STATEMENT OF CYNTHIA ADINIG, LONG COVID PATIENT AND ADVOCATE

    Ms. Adinig. Good afternoon, Chairman Clyburn, and members 
of the Select Subcommittee on Coronavirus Crisis. I am grateful 
for the honor and privilege it is to be here. My name is 
Cynthia Adinig, and I never expected to be here, disabled and 
speaking on behalf of a growing number of community of millions 
from across the Nation.
    Before I got sick in the first wave, I was a multitasking 
supermom and entrepreneur. I ran two businesses, volunteered at 
my church and multiple charities while homeschooling my young 
son. Unfortunately, I can no longer serve or work in the 
capacity that I used to because from time-to-time now, my body 
becomes overwhelmed with nausea, dizziness, intermittent 
paralysis, crippling joint pain, and unexpectedly high heart 
rate to the point I fear I am having a heart attack or a 
stroke. I also currently have a seven-year-old genius son who 
suffers from Long COVID.
    The summer of 2020 was many, many trips in a hospital, and 
I was dying. I lay awake at night every night thinking 
mournfully about the very real potential my son will grow up 
without a mother. As my struggle to recover continued, I was 
unexpectedly thrust into advocacy stemming from a blatant 
racially biased incident in September 2020. While being a 
wheelchair-dependent person at the time, I was threatened with 
arrest by emergency room hospital staff while seeking medical 
help during an episode of dangerously low oxygen and high heart 
rate. The same hospital had tested me for illicit drug use 
without my knowledge 3 times prior in response to the Long 
COVID symptoms I presented with. In spite of my negative drug 
tests repeatedly coming back negative for illicit drug use, I 
was even slated to be given Narcan for withdrawal during one of 
my admissions for Long COVID. Yet without apology, this 
hospital now touts itself as a post-COVID rehabilitation 
center.
    I am standing here today thanks to a heavy regimen of 
medications, but I still remain disabled, chronically ill, and 
under treated. Unfortunately, my last trip to the emergency 
room from Long COVID just two weeks ago remained startling 
reminiscent of my care two years ago as it produced little more 
than this bruise from my IV of fluids. Though I went to the 
hospital with symptoms common for myself and others stemming 
from Long COVID, I wasn't administered any medication, nor was 
the protocol for my diagnosed symptoms followed. As I stiffly 
hobbled out the hospital at the crack of dawn, I caught an Uber 
home, mulling over the harsh reality that efforts and advocacy 
thus far has resulted in little visible progress in education 
of medical staff concerning Long COVID. I am currently tasked 
with a monitoring my son's vitals daily, with little hope of 
getting him care for his intermittent struggle of an elevated 
heart rate, blurry vision, and fatigue, as there are very few 
experienced post-viral pediatric specialists in the Nation.
    I know my mention of race in regards to Long COVID care 
will make some of those watching this hearing defensive. 
However, it is clear through unbiased studies and historical 
records that race and gender play a major part in hurdles in 
American healthcare. Some who listen may even rebut that my 
mention of racism is a means to divide and provoke. A select 
few may even say I should simply be happy with the current 
level of Long COVID healthcare in America, that my privilege of 
standing here before you should be enough. But to quote Martin 
Luther King, Jr, ``I criticize America because I love her.''
    I can proudly say that I know we as Americans, including 
yourselves as Members of Congress, can come together in 
addressing Long COVID, as I owe much of my recovery to many in 
the ME/CFS community, former complete strangers, such as 
Ashanti Daniels, Wilhelmina Jenkins, and Rivka Solomon, who 
heard my story and leaped to act.
    Long COVID is projected to directly affect over 20 million 
within our Nation, and the strain it puts on our economy and 
working families is far greater. I am asking that our Members 
of Congress come together and pass the CARE for Long COVID Act, 
to create an official COVID-19 victims and survivors memorial. 
And I ask you to please permit to making a Federal standardized 
disparity index system for medical centers. I don't ask you 
this to do this for me and the future of my precocious bright 
son, but also in remembrance of over 1 million lives lost to 
COVID and for every American family that has been impacted by 
this pandemic.
    Thank you.
    Chairman Clyburn. Well, thank you very, very much. We have 
now heard from all of our witnesses and each member. We will 
now have five minutes for questions.
    The chair recognizes himself for five minutes.
    Ms. Adinig, we have just heard from your opening statement 
that you have suffered from severe and often debilitating Long 
COVID symptoms over the past two years. Adding insult to 
injury, you have shared with us in your statement medical 
professionals are not taking your symptoms seriously. Now, not 
many of us have had that experience of not being taken 
seriously or being disbelieved. Could you share a little more 
as to what that experience is like?
    Ms. Adinig. Absolutely. It has been a traumatic experience. 
I came into the healthcare system thinking that I was going to 
a safe space, a space where I would receive help. But week 
after week, as I starved as Long COVID has caused me to develop 
a severe allergic reaction to all food and water, I starved for 
weeks to the point that I ended up in a wheelchair. I knew I 
was dying. I begged for help from several hospitals, and no one 
listened; and I was terrified that I would not see my son's 
fifth birthday. And in spite of that, I still have to go back 
to those same spaces for care in hope that maybe this time they 
will listen, but sadly, in spite of my diagnosis of Long COVID 
MCAS, POTS, dysautonomia, multiple chemical sensitivity.
    Chairman Clyburn. Now, you know this, but I just want to 
reiterate that you are not the only one suffered from Long 
COVID. We have experienced this doubtful questioning.
    To illustrate that point, I ask for unanimous consent to 
enter into the record a statement that this committee has 
received from Senator Tim Kaine, who has been suffering from 
Long COVID since March 2020.
    Without objections.
    Chairman Clyburn. Senator Kaine writes, ``For the last two 
years, I have experienced constant nerve tingling, which feels 
like every nerve in my body has had five cups of coffee.'' 
After Senator Kaine began to share his non-COVID experience 
publicly, he heard stories from many others suffering from the 
condition and struggling to be taken seriously. He further 
writes, ``Many who shared their Long COVID stories with me felt 
that they were not being believed by the medical community or 
that their symptoms were being misdiagnosed and 
mischaracterized as anxiety or depression.''
    Ms. Davis, I understand that you have also been affected by 
Long COVID and have worked with many other Long COVID patients 
through advocacy. What can Long COVID patients like Ms. Adinig, 
and Senator Kaine, and yourself do to educate medical 
professionals and the public at large about the real sufferings 
and struggles you are facing?
    Ms. Davis. I mean, I think that you know, we are all doing 
as best we can. But really, there needs to be a large-scale 
education program, both for the general public about what Long 
COVID is, about confronting a lot of these misconceptions about 
what Long COVID is, communicating that post-viral illness 
happens after almost every virus from mono to Ebola, to West 
Nile. You know, we learned just last year that the EBV virus 
can cause multiple sclerosis decades down the line. We know 
that HPV leads to cervical cancer. We should have expected 
this. We know from the last SARS that 27 percent of SARS-1 
survivors had almost exactly the same condition that we are all 
suffering. So we really need a large-scale education program of 
the public and medical providers.
    Chairman Clyburn. Well, thank you very much. The chair now 
recognizes Dr. Green for five minutes.
    Mr. Green. Thank you, Mr. Chairman, and again, thanks to 
our witnesses. I appreciate everyone's comments.
    First, I would like to address the submission I had from a 
group of clinicians who have discovered a mechanism external 
counter-pulsation and FDA-approved treatment that seem to be 
working for Long COVID, particularly the pulmonary symptoms of 
it. And the point I want to make here is that during this COVID 
response, the government has come in and restricted a lot of 
what physicians can do, and it is the clinical decisionmaking 
of doctors that are making a difference.
    And I was impressed by your testimony and what you are 
doing, Dr. Verduzco-Gutierrez. I really appreciated your 
statements. We can't let the government dictate physicians and 
take away their clinical judgment. It is a tragedy, but if you 
look at what California is doing, it is unbelievable, and we 
need to let doctors be doctors. I think that is ultimately the 
point I was making with that.
    I also submitted an article from the Annals of Internal 
Medicine, one of our country's most revered medical journals. 
This ongoing longitudinal study conducted and funded by the NIH 
examined a cohort of patients in an effort to better understand 
the long-term medical consequences of COVID infection. The 
study, in addition to examining medical history, symptomatic 
issues, conducting diagnostic evaluations, echocardiograms, 
bloodwork, and neurocognitive assessments on the patients. In 
other words, it is a pretty robust clinical study looking into 
the causation and physical manifestations of Long COVID.
    Upon clinical examination of a wide range of biomarkers and 
variables, the study did not find meaningful variations between 
those with PASC, the clinical term for Long COVID, and those 
without it. In fact, the study did not find evidence to support 
some of the commonly suggested causes of Long COVID, such as an 
abnormal immune response, ongoing organ damage from COVID-19, 
and inflammation. In short, the initial observation of this 
clinical investigation have not demonstrated clear 
pathogenesis. That doesn't mean the issue doesn't exist. That 
is important to differentiate here, but it did not find a 
pathogenesis arising from prior infection. So the precise cause 
of these symptoms is still not yet understood. Of course, as I 
mentioned in my opening statement, additional research is 
needed to gain a sound medical understanding of this and 
advance our ability to treat these patients presenting with the 
symptoms following COVID infection.
    And my first question is to the Doctor, who is here with us 
today. Two questions. You know, first, what are the clinical 
criteria that you use to make the diagnosis of long-term COVID?
    Dr. Verduzco-Gutierrez. The clinical diagnosis that I use 
is. First, we don't have a great diagnosis, and there are 
several different, you know, whether you look at the World 
Health Organization, the NIH, you know, there is inconsistency. 
But part of my evaluations, I see the patients. I listen to the 
patients, you know. Some of them did not have a positive test, 
some of them didn't make antibodies, but do they have a history 
of a likely infection with the coronavirus. And then they have 
ongoing symptoms that consist of, I mean, in some of the 
research, including the one led by Hannah Davis is, you know, 
200 types of symptoms that are ongoing and just trying to 
address each of those symptoms when I see them.
    Mr. Green. So I guess, as I understand, there is no real 
established criteria to make the diagnosis that physicians have 
agreed on or clinicians have agreed on. My other question is, 
are there other encephalopathies? And I know you are treating 
the brain impact in your PM&R practice. Are there other 
encephalopathies out there that we could be missing? For 
example, if we think this range of 200-plus symptoms, are we 
missing something if we say, hey, this must be Long COVID? Is 
the possibility out there?
    Dr. Verduzco-Gutierrez. We need more research to look into 
it to say, you know, is there something else that we are 
missing?
    Mr. Green. OK. To your knowledge, as a physician and 
researcher, what do you think is the likelihood of a person who 
has had a case of COVID that did not require hospitalization 
going on to have Long COVID? How many of your patients were not 
hospitalized on their initial COVID infection but have 
developed Long COVID?
    Dr. Verduzco-Gutierrez. The beginning few months, probably 
the first siz months when more patients were hospitalized, only 
25 percent had been hospitalized. At this point, where a lot 
fewer patients have been hospitalized, probably five percent or 
less have been hospitalized.
    Mr. Green. Mr. Chairman, I think my time is up.
    Chairman Clyburn. Thank you. The chair now recognizes Ms. 
Waters for five minutes.
    Ms. Waters. Thank you very much, Mr. Clyburn, for this 
meeting on this subject. I have been reading as much as I 
possibly can about Long COVID, and it seems as if, once again, 
the vulnerable populations in this country, who have not had 
access to healthcare, who have not been part of the research 
that is being done or should be done, are at great risk. And so 
I believe that with the limited information that we have, that 
certainly Long COVID exists, and certainly, there are those who 
are severely impacted by it. Many of those will not be able to 
work continuously. They will be disabled.
    And so, again, we don't want to make the same mistakes that 
we made, missing these vulnerable populations and not getting 
the vaccinations or the testing done in a timely manner. So 
this is an important issue, and we must move very aggressively 
to try and make sure the research is done, and it is done with 
all of the vulnerable populations that might get missed and not 
get treated.
    Having said that, Ms. Adinig, I want you to know that from 
the information that I have read, that those who perhaps have 
Long COVID can experience all kinds of symptoms, and it is not 
consistent with 1 or 2. It may be 3, 4, or 5. And even though I 
am looking at some of the information that I have, it does not 
include what it does in severe headaches. I don't see that 
information here. Also, I think that it affects, I am, told the 
eyes, et cetera, et cetera.
    Now, having said this, and the question that was just asked 
about my colleague here about, you know, are there some factors 
that you need to see in order to be able to diagnose. And I 
think what you have said to us, Doctor, pretty much so, is that 
lots of research needs to be done, and there are no exact facts 
of symptoms that can determine that you have it or you don't 
have it, et cetera.
    And so you know what that is going to mean when people are 
disabled, and they try and get support so that they can have a 
decent living, a decent quality of life? They are going to get 
turned down. They are going to be suspected of not telling the 
truth. They are going to be ignored. And so this is a problem. 
This is a big problem, and a really big problem being that we 
expect that there are new variants, B.4 and B.5, that will be 
actually operating in the very near future if it is not already 
operating as a variant. They complicate COVID-19.
    And so I appreciate your testimony and you sharing with us 
what you have experienced and what you are going through. I 
appreciate all of those who are here today, giving us the 
information that you have. But I think that those of you in the 
medical community are going to have to be our best advocates. 
You are going to have to say to those who have the 
responsibility but give support to Long COVID victims that we 
cannot second and third, and fourth guess what they are telling 
us. Do all the testing that you can do. If the complications 
are there, some of them can be seen, some of them can be 
detected, but not all of them. And I came in a little bit when 
Mr. Clyburn was talking about something that somebody had 
described as going through their body that felt like it was 
worse than having multiple cups of coffee.
    Chairman Clyburn. Senator Kaine.
    Ms. Waters. Senator Kaine. Is that who it was? So I thank 
you again. I don't really have questions because, you know, 
there are so many questions. And so, just alerting us and, you 
know, saying to us, this is enough for me based on what I have 
learned. So thank you for being here today, all of our 
witnesses that are participating here. And, again, to doctors 
and our medical community, you are going to have to be our best 
advocates. You are going to have to tell about the 
complications as you encounter them. Thank you very much.
    Chairman Clyburn. Thank you, Ms. Waters. The chair now 
recognizes Mrs. Maloney for five minutes.
    Mrs. Maloney. Thank you, Mr. Chairman, and thank you for 
this incredibly important and informative hearing.
    People with Long COVID face many hurdles, as we heard 
today, accessing care and the benefits that they deserve, and I 
did not realize until this hearing what a terrible disease it 
is with lingering challenges. There is no single test to 
diagnose Long COVID, and some physicians may dismiss Long 
COVID's wide variety of symptoms or attribute them to other 
health problems, which was another concern. So I would like to 
ask Dr. Gutierrez, in your clinical practice, what are the 
greatest challenges in assessing whether someone has Long COVID 
and providing treatment?
    Dr. Verduzco-Gutierrez. Thank you very much. The greatest 
challenges are, first, access to care, so getting patients to 
be seen in the clinic, and then once the patients are being 
seen in the clinic, then getting them some of the tests. There 
are tests that are being done in research right now. We know 
that certain research is showing maybe patients may have micro 
clots or they may have abnormal immune markers that I cannot 
check on a regular test from a lab company or that our 
pathology office doesn't have the microscope to look for micro 
clots. So there is, again, difficulty finding diagnoses. And 
then also, that is why I feel it is best to work with 
multidisciplinary care because there are so many organs and 
body systems that can be affected in a single patient, as you 
have heard from these witnesses today, that it is best if it is 
done together with a cardiologist, a pulmonologist, or 
neurologist, rheumatologist, et cetera. And that type of 
multidisciplinary organized care is also very difficult to get, 
expensive care to get and can be a barrier for many.
    Mrs. Maloney. Now is there a test now to diagnose that 
someone has Long COVID, because I was told there was no test 
for it, and they are leaking papers. Dr. Gutierrez?
    Dr. Verduzco-Gutierrez. No, ma'am, there is not.
    Mrs. Maloney. There is not. OK. What is the status of 
getting one? Are they researching it or----
    Dr. Verduzco-Gutierrez. It is being worked on. There are 
investigators in the community across the world, and then they 
are working through the NIH RECOVER trial as well. Not coming 
fast enough.
    Mrs. Maloney. Reclaim my time. Some Long COVID patients are 
required to show proof of a positive coronavirus test in order 
to receive care, even if they get sick in the early days of the 
pandemic before the tests were widely available. So I have 
heard that some people may have Long COVID, and yet they don't 
have symptoms right now of COVID, so it is hard for them to get 
care. Can you address this, Ms. Davis? How can the lack of a 
Long COVID diagnosis affect the ability to obtain treatment and 
support for people who should be eligible for government 
benefits?
    Ms. Davis. Yes, absolutely. That is one of the biggest 
issues we faced, particularly those of us in the first wave. I 
think one thing that is not very commonly known is only three 
percent of cases from the first wave had PCR documentation by 
the CDC numbers, and throughout the pandemic, only 1 in 4 cases 
are documented by PCR. So that actually is the majority 
experience, that you don't have a PCR documentation. And with 
the rise of at-home testing and rapid testing with nowhere to 
really report, that has increased more recently as well.
    And so, there has been a tremendous bias toward people who 
have access to test accessibility, who had private healthcare 
in the beginning of the pandemic, or who had connections with 
medical providers, et cetera because for a very long time and 
still to this day, Long COVID clinics require a PCR test. And 
there has been some movement to doing antibody tests, which has 
actually made it worse since there is a huge gender bias 
against who makes antibodies. About a quarter to a third of 
people never make antibodies after a COVID infection. That is 
more likely if you had a mild case. It is significantly more 
likely if you are a woman. And of everyone who loses 
antibodies, which most often you lose antibodies in the first 
couple of months, 80 percent of people who lose antibodies are 
women.
    So you have all of these Long COVID patients trying to get 
into these clinics, trying to get proof of PCR antibody tests, 
and the vast majority of patients who can't get into these 
clinics are socioeconomically disadvantaged patients and women. 
So it is causing a huge bias in terms of healthcare, and that 
also has ongoing implications for research.
    Mrs. Maloney. Well, my time has expired, and it shows a 
tremendous impact on Long COVID on women, and we need to get 
more information. Thank you all for your testimony. Thank you, 
Mr. Chairman, and I yield back.
    Chairman Clyburn. Thank you, Mrs. Maloney. The chair now 
recognizes Ms. Velazquez for five minutes.
    Ms. Velazquez. Thank you, Mr. Chairman, and thank you all 
for your great testimoneys and insight into this important 
issue.
    Ms. Bach, women, and the community of color faced unique 
economic threats from Long COVID because they are over-
represented in low-wage jobs that are challenging for workers 
with long-term health conditions. And these jobs typically lack 
crucial benefits, such as paid medical leave. Ms. Bach, how 
does a failure by employers to provide paid medical leave to 
exacerbate the harms of Long COVID?
    Ms. Bach. Thank you for the question. I will admit this is 
an issue that has been top of mind for me. The burden on the 
most vulnerable workers is, as it often is, the heaviest. There 
are a number of reasons. One is disproportionate exposure to 
COVID in the early days of the pandemic when many of these low-
wage workers were classed as essential workers. Two is the lack 
of remote working options, which means that they do have to be 
at work, and three, of course, is sheer financial need.
    When you are making $20,000 a year, the difference between 
working and not is really life or death. So the failure of 
employers to provide paid sick leave has at least two pretty 
significant consequences. The first is people go to work sick, 
and when they go to work sick, they are more likely to give 
other people COVID, right? It is a failure of infection 
control. You see increasing numbers of infections because 
people can't afford to stay home. The second is it means that 
when people are sick, they push through because they don't have 
another choice. I am not a medical professional. I have heard 
anecdotally that the worst thing you can do when you have 
COVID-19 is to fail to rest. And unfortunately, a lot of these 
low-wage jobs, if we think about things like, you know, 
certified nursing assistant, retail worker, food service 
worker, these are very physically demanding jobs.
    Ms. Velazquez. Thank you for your answer. Ms. Davis, based 
on your research, can you please explain how symptoms of Long 
COVID make it more difficult for affected individuals to work 
full time?
    Ms. Davis. Absolutely. We found that cognitive dysfunction 
and memory loss was one of the most common symptoms, and that 
happened to around 90 percent of Long COVID patients and 
persists for a very long time. A lot of symptoms improve over 
time, like including respiratory symptoms. The cognitive 
functioning symptoms do not, and we ask basically how they 
impact people's lives, and it impacts work primarily. It 
impacts work the most, concentrating, but also talking to 
people, communicating information, and receiving communication. 
A lot of people have audio processing issues.
    It also impacts watching children. It impacts driving. Over 
half of people with brain fog said that they were unable to 
drive in some capacity. That is true of myself. It really 
prevents you from participating in the world. It truly does 
feel like mild dementia. I had ADHD before I got sick. It is 
not like cognitive impairment. It really is disruptive to every 
avenue of your life.
    Ms. Velazquez. Thank you. And Ms. Bach, can you please 
explain the need for employers to recognize Long COVID as a 
disability and what can we do to provide information that will 
make them aware of an issue?
    Ms. Bach. Yes. So I think there are two things. One, 
workers need to be aware that Long COVID is a condition that is 
covered under the ADA, and I think the government could do a 
lot to raise that awareness among workers. Second, employers 
not only need to be made aware that Long COVID is covered under 
the ADA. It would be helpful for employers to see examples of 
what Long COVID accommodations can look like in various 
industries. So for example, bringing together a group of 
employers who have made these accommodations, who have seen the 
productivity boost, which you absolutely will because once you 
hold onto workers and having them explain the types of 
accommodations they are making, I think it would be very 
valuable for the private sector as a whole.
    Ms. Velazquez. And can you please, Ms. Bach, explain what 
efforts Congress should consider to protect Americans 
struggling with long-term COVID?
    Ms. Bach. Yes. I mean, No. 1, more investment in research 
because the best thing we can do is avoid people getting sick 
and help them get better. No. 2 better access to Social 
Security Disability benefits. Right now, people are getting 
denied all over the place because there is no objective test. 
No. 3, get rid of the Medicare waiting period for the SSDI 
recipients so they can access care. And No. 4, really invest in 
helping employers understand that they are legally obligated to 
make these accommodations, and it is to their benefit to do so.
    Ms. Velazquez. Thank you. Mr. Chairman, I yield back.
    Chairman Clyburn. Thank you very much. A vote is on, but I 
think we have got time for one more question there.
    The chair now recognizes Mr. Raskin for five minutes. We 
will get two more questions.
    Mr. Raskin. Mr. Chairman, thank you so much for this very 
important and shocking hearing. Ms. Bach, I wanted to ask you 
some questions. I was moved by your testimony where you tell us 
there are an estimated 60 million working-age Americans who 
have Long COVID and 4 million who have a reduced or just 
vanquished ability to work at all, and that these numbers are 
likely to increase as more people get infected. So tell us, 
overall, you are an economist?
    Ms. Bach. No, not really. I am an ex-management consultant, 
so I do a lot of analytics work.
    Mr. Raskin. All right. Well, what is your estimate of 
whether Long COVID is actually going to have an impact on the 
American economy? I mean, does this problem have enough 
magnitude actually to affect the economy generally?
    Ms. Bach. So it does. I mean, as you all in this room know 
better than I, when we see a 0.5 percentage point decrease in 
the labor participation rate, this is front-page news. What I 
am talking about is the number of people out of work that is 
equivalent to 2.3 percent of the entire American employee 
population, so this is a huge number. And as I mentioned, what 
that does not take into account is the lost productivity of 
people who are still working but they are working sick, as 
Hannah said. So there is essentially no way this could not have 
a significant impact on the economy.
    Mr. Raskin. Right. So I am not quite sure the different 
mechanisms you have used to make these estimates, but what 
kinds of data collection are actually necessary for us to get a 
more definite hold on the problem?
    Ms. Bach. Yes, this is a great question. When I originally 
wrote my Brookings piece about this, the whole point of the 
piece was to call for better data collection. So the two places 
where I would be collecting data to understand the economic 
impact are the Household Pulse Survey and the Current 
Population Survey. The Household Pulse Survey did just add four 
questions on Long COVID prevalence, which is fantastic, and 
that is where I started with my estimates. But then they need 
to ask questions about Long COVID duration and Long COVID 
impact on work.
    The advantage to using the Household Pulse Survey is it is 
quick. We can get these questions essentially in the next wave. 
Might be a slight exaggeration. The Current Population Survey, 
on the other hand, is extremely statistically robust, and it is 
longitudinal. And so the advantage to using the Current 
Population Survey is you can track this over time with a high 
degree of accuracy, again, lead questions on prevalence and 
impact on work.
    Mr. Raskin. Yes. We have had this conflict ever since our 
committee began. Really, ever since COVID-19 was upon us, we 
have had a conflict between those who have tried to insist upon 
very strict public health protocols, masking, pressing for 
vaccination, and so on, and then a kind of laissez-faire, pro-
herd immunity philosophy. We saw that in Deborah Birx's before 
the committee and in her book where she wrote about that split 
within the Trump administration, where she was trying to stick 
with the more traditional, you know, CDC science guidelines 
versus those things. ``Just let it wash over the population.'' 
``We will lose some people.'' We ended up losing over a million 
people so far, but that is really the only thing that is going 
to work.
    But your points or the points coming out in the whole 
hearing today suggest this is not only a dangerous strategy 
from the standpoint of people who are really vulnerable to it, 
but it is also dangerous to some random cross-section of people 
who are going to end up with Long COVID. And that doesn't 
necessarily correspond to the people who are most vulnerable in 
the first place, right? I mean, in other words, it is not just 
people who had some kind of preexisting medical condition, and 
we are getting it. Is that right?
    Ms. Bach. That is exactly correct.
    Mr. Raskin. And so what does it make you think about those 
who say, well, look, just let it be like, you know, low-grade 
flu or colds, just let it run wild, as opposed to those who are 
saying, no, we still have to take it seriously, get people 
vaccinated and get people paying attention to the public health 
dimensions?
    Ms. Bach. From my perspective, the position that we should 
just let it run wild and not try to mitigate it can only be 
held if you do not believe that our economic security is 
important.
    Mr. Raskin. All right. Well, thank you very much for your 
work on it and for testifying, and Ms. Davis, thank you as 
well. And I yield back to Mr. Chairman.
    Chairman Clyburn. Thank you very much. The chair recognizes 
Mr. Krishnamoorthi for five minutes.
    Mr. Krishnamoorthi. Thank you, Chair, and thank you to all 
of you for coming before us. You know, in full disclosure, I 
should say that one of my children actually has Long COVID, and 
so this is an issue that I care about personally. And I wanted 
to just, you know, throw it out there for anybody to answer 
this question, which is, I guess, how much of the money that we 
are trying to devote to the study of Long COVID is actually 
going toward the study of Long COVID and children right now? 
And I guess, you know, what more can we do to put resources in 
that particular area?
    Ms. Davis. I could take at least part of this if that is 
fine.
    Mr. Krishnamoorthi. Yes, thank you.
    Ms. Davis. I think Long COVID in children has been 
dramatically understudied, in part, because all of the points I 
made earlier about antibody and PCR testing actually doubly 
applies to children. A very small percent of children test 
positive on PCR. There were two studies that came out showing 
that 50 to 90 percent of child cases are missed on PCR, even in 
children who then seroconvert later on. This is because 
children generally have lower viral loads than adults. 
Similarly, children also don't seroconvert nearly as often as 
adults, is about a third of what adults do.
    And so what this ends up is these control groups where you 
are studying children, but you are also putting Long COVID 
children in the control group by accident by weeding them out 
with PCR and antibody tests. So I think there, again, needs to 
be a widespread information about PCR and antibody accuracy in 
children to better strengthen the research about Long COVID in 
children.
    Mr. Krishnamoorthi. Can I interrupt you? I just want to try 
to understand what you said. I am not so familiar with a couple 
of the terms that you used. Are you saying that PCR tests may 
not correctly predict the incidence of Long COVID or COVID in 
children because it doesn't register even if they have it?
    Ms. Davis. Yes, PCR and antibody accuracy is way lower in 
children. Significantly, significantly lower.
    Mr. Krishnamoorthi. And to the point where it is usually 
underestimating the prevalence of COVID in children? And what 
are the ages that you say that where it is having that impact?
    Ms. Davis. My understanding is it is the full age range, I 
believe younger than 12. It is more significantly or less 
accurate under 12. But the result is that you have all of these 
Long COVID children with negative PCRs or negative antibodies, 
who, in research, get put in the control the healthy control 
group. And so you are comparing a lot of Long COVID kids with 
PCR tests to a lot of healthy kids, plus a lot of Long COVID 
kids with negative PCR tests. And so when you compare it, it 
didn't look like the symptoms are that different because you 
are actually comparing Long COVID kids against each other.
    Mr. Krishnamoorthi. Oh, wow.
    Ms. Davis. So that is a major issue I see in Long COVID 
research with kids. And the other thing I would bring up is 
that in terms of myalgic encephalomyelitis, you can have mild, 
moderate, and severe M.E. Severe ME is when you are bedbound, 
and one of the greatest risk factors for getting severe M.E. is 
having childhood onset, and that is not talked about anywhere. 
And that is one of the biggest long-term dangers I see is a lot 
of children who get sick for the first time as kids who keep 
getting repeated infections and end up bedbound to bed with, 
you know, all of the sensory issues that you see in severe 
M.E., and that makes me very worried.
    Mr. Krishnamoorthi. So just to recap what you said, it 
sounds like you are saying there are a lot of false negatives 
associated with PCR tests in children. I guess, let me flip the 
question, which is, what are some effective treatments that 
work better in children than adults or that are especially 
effective in children that perhaps people don't know about?
    Ms. Davis. I am not sure if there are treatments that work 
particularly better in children, but I know that there is a 
very good primer on ME/CFS in children, which a lot of Long 
COVID in children is ME/CFS. There are researchers like Peter 
Rowe, who have studied this extensively, who I really believe 
we should be uplifting and funding because there are really, 
truly less than ten child experts in post-viral illness in the 
country. We really need them to be leading this research.
    Mr. Krishnamoorthi. Oh, wow. Well, thank you for that. I 
will just end by saying my first son, who has this Long COVID, 
has asthma. And, you know, when it first came on, you know, we 
thought it went away within, like, just a couple of days, and 
then months later, it came on with a roar, I mean, which is 
just a horrible, terrible experience. It causes the hunt for 
doctors all over the place to try to figure out. So I can 
personally attest that this is a huge problem for millions of, 
I mean, numerous families, and I hope that we can do more to 
help you to understand this. And count me, anybody else on the 
committee, Republican or Democrat, that is willing to team up 
with me on this. I would love to work with you to help our 
researchers here, so thank you.
    Ms. Davis. We know that asthma and asthma and allergies are 
risk factors because of mast cell involvement. So you could 
also look for a mast cell specialist. I am sorry about your 
son.
    Mr. Krishnamoorthi. Thank you.
    Chairman Clyburn. Before recognizing Dr. Green for a 
closing statement, the chair recognizes Ms. Pressley. I think 
she has joined us.
    Ms. Pressley. Yes. Thank you, Mr. Chair, and thank you, 
Chair Clyburn, for convening today's hearing, and to the 
members of the Select Committee for allowing me to participate, 
and to the witnesses for courageously sharing your own stories 
and the stories of your patients, of your friends, and 
relatives that millions of people impacted by Long COVID.
    In my district, the Massachusetts 7th, I hear similar 
accounts from my neighbors, like adults experiencing intense 
cognitive dysfunction impacting their employment and young 
athletes struggling to even get out of bed. Your testimony 
illustrates in no uncertain terms that Congress must take 
action to alleviate the pain, suffering, grief, and trauma 
resulting from the crisis within a crisis that is Long COVID. 
We need to advance bold, equitable policy that meets 
unprecedented hurt and harm with significant investments in 
healing and justice. Yes, our response to Long COVID should 
center on justice, disability justice, gender, racial, and 
healthcare justice.
    I am grateful to the Biden Administration for taking steps 
to include care for those experiencing Long COVID, and our work 
continues, which is why I work in close partnership with Long 
COVID patients, advocates, clinicians, and public health 
experts and introduced the treat Long COVID Act to expand 
access to multidisciplinary treatment clinics.
    Dr. Gutierrez, in your experience, how do Long COVID 
treatment clinics help patients?
    Dr. Verduzco-Gutierrez. Thank you very much. I feel that in 
clinics, especially when they are multidisciplinary in nature, 
they was willing to take time with the patients, listen to 
their concerns and address, and have a good history and 
knowledge of other post-viral illnesses and myalgic 
encephalomyelitis, CFS, as we have talked about today. And 
these are the places where patients will be able to get seen, 
get heard, get diagnostics that they need that are appropriate 
for their conditions and get individualized treatments for what 
they have.
    Some do need resting and pacing and not traditional 
rehabilitation programs. Some need further workup with cardiac 
testing, tilt table testing to work them up for their 
dysautonomia. Some will need to see immunologists, 
rheumatologists. And so it is important that patients are 
working with teams, including physical medicine and 
rehabilitation specialists, to be able to treat their Long 
COVID, including, as Dr. Green talked about, the EECP, enhanced 
external counter-pulsation treatments.
    Ms. Pressley. Thank you. Ms. Davis, in your experience with 
Long COVID, why do you think the Federal Government should 
invest in multidisciplinary Long COVID clinics as an equitable 
patient-centered treatment option?
    [No response.]
    Ms. Pressley. Ms. Davis?
    Chairman Clyburn. Ms. Davis?
    Ms. Davis. Sorry. Apologies for that. I am a huge supporter 
of the Treat Long Covid Act. Long COVID clinics are extremely 
necessary to get all of the care in one place. We need clinics 
that don't require treatment be prioritized based on insurance 
coverage. We really need that clinics have access to providers 
who are very knowledgeable in post-viral illness, including 
myalgic encephalomyelitis and dysautonomia, so I really hope 
that we can make that happen.
    Ms. Pressley. And, Ms. Adinig, in just a few words, how do 
you think your experience to battle Long COVID would have been 
different? Have you had access to a clinic of informed 
culturally congruent specialists that could treat you and your 
son where you live?
    Ms. Adinig. I feel as if we had the care from the 
beginning, then I wouldn't be in front of you today telling the 
story. I would have avoided so much suffering, so much trauma 
to myself and my son. I would be fully recovered and doing what 
I do best, which is working for local nonprofits and giving 
back to my community.
    Chairman Clyburn. Well, thank you very much.
    Ms. Pressley. Is there more from Congress? How much 
investment is that? Thank you, Mr. Chair.
    Chairman Clyburn. Thank you, Ms. Presley. Before closing, I 
want to recognize Dr. Green for a closing statement.
    Mr. Green. Thank you, Mr. Chairman, and thank our witnesses 
for taking time out of their day. Clearly, those of you who 
have had incredibly challenging experiences, thank you for 
sharing.
    What I want to say is just because there is no accepted 
clinical criteria for making a diagnosis and there is not a 
test for the 200-plus symptoms post-COVID infection that our 
clinicians have identified, doesn't mean that there isn't a 
legit disease here or illness. It also doesn't mean that 
something else isn't going on. Correlation is not causation. 
And we as clinicians, as researchers have got to get to the 
bottom of it, to make assumptions because when this is 
happening in the chronological order of the COVID pandemic, is 
an informed decision, but, again, it is not research showing 
causation. So I want us to be careful. You should never have 
been dismissed. There is no clinician who should ever behave 
that way. And at the same time, clinicians can't just assume 
that something is caused by something else. We need data. And 
so we got to get to the bottom of it.
    Which brings me to my second point that I have tried to 
make today is that state bureaucrats should not be telling 
physicians how to be physicians. Clinicians should be allowed 
to make clinical judgment decisions. In states like California 
that are trying to tell their doctors they can't do certain 
modalities and they can't do other things, it is just simply 
wrong. We train our doctors to make clinical decisions, just 
like this outstanding physician here who is away from her 
practice today, away from her patients to be here to testify. 
We should let them make the decisions that they have been 
trained to make. Thank you, Mr. Chairman, and I yield.
    Chairman Clyburn. Thank you very much, Mr. Green.
    Before we close, I ask unanimous consent to enter into the 
record a letter the committee has received from the COVID-19 
Longhauler Advocacy Project.
    Without objection, so ordered.
    Chairman Clyburn. In closing, I want to thank all the 
witnesses who testified before us today. We appreciate your 
insight and expertise as we seek and learn more about Long 
COVID.
    Now, I want to truncate my closing statement because of the 
vote that is on, and let me just reiterate. Vaccination is 
crucial in preventing severe illness, hospitalization, and 
death from the coronavirus. As we have heard today, it may also 
prevent symptoms of Long COVID. I urge all Americans who aren't 
currently up to date on their coronavirus vaccinations to get 
vaccinated and boosted as soon as possible.
    With that, and without objection, all members will have 
five legislative days within which to submit additional written 
questions for the witnesses to the chair, which will be 
forwarded to the witnesses for their response.
    Chairman Clyburn. We are now adjourned.
    [Whereupon, at 11:40 a.m., the subcommittee was adjourned.]