[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
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Available on: govinfo.gov,
oversight.house.gov or
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.]