Are Long Covid Patients Exaggerating? Biden Top Doctor Says No: “Long COVID is real”

Rachel Levine

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Marianne O’Hare : Welcome to Conversations on Health Care. This week we welcome Dr.
Rachel Levine , Assistant Secretary at HHS on the Bi den
Administration's efforts to address l ong COVID, c hild vaccine uptake ,
monkeypox and women's reproductive right s.

Dr. Rachel Levine : We want to make sure that we protect patients and providers from
discrimination . W e want to protect emergency access to abortion
care.

Marianne O’Hare : Fact C heck.org ’s Managing Editor Lori Robertson checks in and we end
with a bright idea, improving health and wellbeing in everyday lives.
Now here are your hosts Mark Mas s elli and Margaret Flinter.

Mark Mas selli: Our guest leads an office that just reported an estimated 7 to 23
million Americans have developed L ong COVID. Research has s hown a
Long COVID condition can last weeks or months effecting all ages,
backgrounds, and demographics. Previously healthy individuals may
become disabled while others heal.

Margaret Flinter : Here to discuss this issue and other timely topics is Admiral Ra chel
Levine , Assistant Secretary for Health in the US Department of Health
and Human Services. S he's connected to the researchers who are
working quickly to better understand Long COVID which is a
multisystemic and multifaceted disease.

Dr. Rachel Levine : Thank you very much. I'm very pleased to be here.

Mark Masselli: Yeah, we're so glad that you're back j oining us in Conversations on
Health Care . Y ou were last with us in June of 2021 , a nd at that time
we talked about the health equity in mental health iss ues related to
COVID. Now, the Biden Administration just released the National
Research Action Plan on Long COVID , a nd it's the first US government
wide national research agenda focused in on this issue. Some
clinicians say that patients with Long COVID ar e either unvaccinated
or missing their boosters. Are you seeing that in the work so far?

Mark Masselli: Well, so we are seeing that vaccination is somewhat protective for
people in terms of getting Long COVID , but we need more research ,
a nd that's what the National Research Action Plan in that report
emphasizes is that we have done research through the NIH and CDC
and other departments , but we need more research. T he plan
outlines the research to come.

Margaret Flinter: Well, Admiral, there's another report out now that outlines federal
services that are available to Americans to address Long COVID , a nd it
includes resources for health care personnel who are treating patients
with Long COVID , which is certainly a challenge that's emerging for
health care per sonnel in the US. What are the unique risks for

Rachel Levine

patients with Long COVID and for their health care providers? Is it
significantly different from treating what we might call the initial
stage COVID patients?

Dr. Rachel Levine : Well, we still have more to le arn about all of the different aspects of
Long COVID . There are many different signs and symptoms to Long
COVID , a nd that is really the point of the Research Action Plan
through the NIH and the CDC and others . But you're right, we have a
second report , the services and supports for longer term impacts of
COVID - 19 . T his outlines the federally funded supports and services for
individuals and families experiencing those longer term impacts. It
also does outline d recommendations for physicians and medical
provi ders that are seeing those patients.

W e don't know exactly what is causing Long COVID , it might not be
one thing , but Long COVID is real and those patients need support
and they need treatment. The treatment can't be as specific as one
medication or one sp ecific treatment , but they do need support as we
do for many other patients with these type of chronic conditions.

Mark Masselli: Well, I think you're so right that we need more research, and not only
with NIH, but others as you indicated are doing that. W e read recently
in a science magazine that others have suggested that Long COVID
might actually be a post - infection syndrome and may highlight there
are no auto immune markers to make “ a real disease, ” I wonder if y ou
can address that perspective .

Dr. Rach el Levine : Well, again, I want to emphasize that that Long COVID is real, because
we want to make it to emphasize that patients are not malingering ,
but we don't know exactly , as I said, what causes L o ng COVID. T here
are some research studies that indicate that it might be a chronic
infection with COVID - 19 , a nd there was a recent research study from
Harvard a month or so ago which suggested that . B ut we need much
more research to know if it is a chronic infection or whether it is more
of a chronic inflammat ory response, as you said, a post - infectious
process.

I n my field of adolescent medicine in my academic medicine career, I
saw many , many teenagers and young adults with post - infectious
symptoms, so whether that was patients with neuro immediate
hypotensio n and a tendency to faint associated with other behavioral
aspects, whether it was patients with chronic abdominal pain after
probable viral gastrointestinal infections. This is not new to us. This is
not new to medicine. The one syndrome that we have seen is MECFS
m yalgic encephalomyelitis with chronic fatigue syndrome , a nd we've
been studying that for years. What we're hoping for is that the
research into Long COVID will also give us new perspectives on those
illnesses as well.

Rachel Levine

Margaret Flinter: Well, Adm iral th e shared numbers of people infected and within a
relatively short time in our country h opefully is bringing tremendous
focus on this and we really thank you for your leadership efforts in
this area. There is so much going on in our country right now . I’d like
to ask you about another front, we're still assessing the impact of the
Supreme Court Dob b s decision overturning a constitutional right to
abortion.

President Biden has just praised Kansas voters for rejecting an
abortion ban. T he Justice Depart ment's filed a lawsuit against Idaho to
block a state law that would allow doctors to be criminally prosecuted
for providing abortions. T he President signing an executive order
aimed at supporting Americans who cross state borders for abortions
in terms of access to reproductive health care including abortions.
Can you comment on what more needs to be done , a nd can we
expect to see further actions in the near future?

Dr. Rachel Levine : Well, this is a critical issue for the Biden - Harris A dministration a nd f or
Secretary Becerra and myself and others working at HHS . A ccess to
health care, access to reproductive health care and reproductive
rights is a core value of the administration, really across the federal
government, and particularly for Secretary Becerra and HHS.

T he Secretary has laid out a plan and is working to take action to help
people , and as you said the President signed an executive order. W e
want to make sure that we protect patients and providers from
discrimination. We want to protect emergency access to abortion
care . W e want to make sure that providers have training in the se
services and we want to strengthen family planning care and
emergency contraception in the face of this extremely difficult and
challenging Supreme Court decision .

W e are working through my o ffice of the Assistant Secretary for
Health, and then other offices, our o ffice of Civil Rights and others o n
these initiatives . We have launched a website R eproductive R ights.gov
which is a public awareness website . We are convening hea lth
insurers and calling in them to commit to meeting their obligations to
providing coverage for contraceptive services at no cost, which is
required by the Affordable Care Act. There is new funding to bolster
training and technical assistance for Title X planning providers and
more , so m any different efforts across our department and the
administration on this issue.

Mark Masselli: Admiral let's just stay on that topic for a moment , the administration
has issued guidance to remind health plans and insurer s of the
Affordable Care Act's contraceptive coverage. In light of the Do bb s
decision , a group of senators has asked the Veterans Affairs Secretary
to provide abortion access to veterans in states that restrict or ban
the procedure . W ould you be in favor o f such a move?

Rachel Levine

Dr. Rachel Levine : Well, that's more of a legal issue that for the VA that I can't really
count on, but we want to make sure that people have access to the
reproductive services that they need and they deserve , and so we'll
be working across the department and administration to achieve that.

Margaret Flinter: Admiral , yet another major public health threat. Now in everyone's
consciousness, we're dealing with monkeypox a nd we'd like to give
you a chance maybe to respond to critics some in the LGBTQ
community included, who say that the Biden A dministration has not
done enough maybe to prepare as well as to respond based on what
is happening now. Certainly, we are seeing overwhelming interest in
receiving the vaccine by the targeted populations a t risk at our
community health centers here in Connecticut, but the supply is low.
We don't know whether we’ll be able to be replenished. Can you
comment on this for us?

Dr. Rachel Levine : Sure. Well, the monkeypox infection issue is a critical issue for t he
Secretary and for HHS, and obviously for the administration. They
have just hired a coordinator at the White House and a Deputy
Coordinator, Dr. Daskalakis, who has been in the New York Health
Department and the CDC, very experienced in terms of these
i nfectious disease issues .

R emember that the supply that we have had in the national stockpile
has been for potential smallpox infection, there's no way to have
anticipated that monkeypox would have spread the way it has in the
world and in the United State s. W e are fortunate that we have had a
supply of the Genoese vaccine that we have distributed to the State
Health Departments for A dministration , a nd we are working with the
manufacturer which is located overseas on purchasing more . We have
received much o f that vaccine and are working on distributing that ,
a nd then we've purchased more for the future.

The CDC has outlined a procedure for the distribution of the vaccine
looking where the infections are now, but also looking to where they
anticipate the infe ctions will be in the future s o that we can stay
ahead of this . We have expanded testing , and we have expanded
testing to commercial laboratories , s o testing should be much more
available now . There are five commercial laboratories that can do
testing.

We want to work on mitigation and ways that people can help protect
themselves from infection with monkeypox , which is -- it's different
than COVID - 19 . I t is spread only through close personal contact, it's
not going to be spread across the room the way that COVID - 19 can be
as a respiratory virus. W e're working on distribution of TPOXX , which
is the treatment . Now, again, the treatment was designed for
smallpox, not f or monkeypox , but it is effective against monkeypox ,
and s o we want to work on the distributio n of these resources, which

Rachel Levine

again, the vaccine and the treatment had been stored for potential
smallpox infection, but we are deploying them for the monkeypox
response.

There is another vaccine that people have mentioned, the ACAM2000
vaccine that also has -- does have significant stores in the national
stockpile for any potential smallpox infection , but it's a different
vaccine. It's a live virus vaccine that is not totally attenuated , a nd it
does cause a viremia an active infection in people who then are
usually pretty mild, who then mount this effective immune response .
But for people who are immunosuppressed it can lead to a severe
active infection. I t also can be spread by someone who's been
immunized and could have spread to a close contact who might b e
immunosuppressed.

In the community most impacted , the men who have sex with men
community, and the potential of HIV in that community. The
ACAM2000 is not really an effective countermeasure at this time. W e
want to make sure that we deal with any issues of stigma associated
with monkeypox , anyone can get monkeypox , it just has started and
spread in the men who have sex with men community. T hat's where
we'll be targeting our resources right now.

Mark Masselli: Well, I do want to highlight that the percenta ge of Americans without
health insurance hit a record low 8% i n the first quarter of 2022 , but
maintaining that low rate depends on a lot of factors, whether th e
Senate can extend expanded Obamacare subsidies through the
Reconciliation Bill . As we talk wit h you, it's really unclear if Senator
S inema will cast the crucial democratic vote needed to make this
happen. If the S enator were listening right now, what would you say
to her?

Dr. Rachel Levine : Well, so it's not for me to , as the Assistant Secretary fo r Health , to
give any of the senators personal advice about their vote . A ll I can say
is that it is critically important that we continue that positive trend,
and continue to work on decreasing as much as possible the
uninsured rate in our country, so meas ures that help decrease the
uninsured rate are very impo rtant for medical reasons and for public
health reasons.

Mark Masselli: I'm wondering if I could do a follow up because another big issue that
is the emergency order that the President had still, I th ink, is extended
until October, which for all the 50 states and territories means that , I
believe , there's no sort of redetermination going on in Medicaid, and
that once the emergency order is lifted there may be an enormous
number of people who lose their Medicaid coverage . A ny thoughts of
ways th at that can be mitigated, and again there's a 90 - day promised
back to the states that w e’ ll let you know before we take this action,
but still millions of people in the balance here, what are your

Rachel Levine

thoughts?

Dr. Ra chel Levine : Well, I know that this is a very important issue , a nd I know that
Chiquita Brooks - LaSure the A dministrator of CMS and the Secretary
and others are looking at this very, very closely because it is very
important.

Margaret Flinter: Well , Admiral , we've been at this for a long time, we certainly
remember the pre - Affordable Care Act days and hope the positive
trends that were rocked by it continue . We’re also proud of the work
that our community health centers in terms of providing exceptional
care and sensitive care to our LGBT community and t his includes
gender affirming hormone therapy . You w ere part of a recent
roundtable of families who ha ve children who we re transgender.
Maybe you could share with us a little bit about what you heard about
wha t people need , w hat might help more Americans understand
what's at stake here. Certainly, the vitriol from the anti - trans forces is
very worrisome right now, particularly when we think of our young
people.

Dr. Rachel Levine : W e've made so much progress und er the previous Obama
a dministration and then President Biden's administration for the
LGBTQI+ community , but unfortunately we are facing a significant
politically motivated backlash, where there are politicians particularly
in states that are enacting law s and taking actions that are politically
motivated and very challenging and potentially damaging to
vulnerable LGBTQI+ youth, particularly for transgender youth, and for
gender diverse youth. W e're talking about actions in Texas, and
actions and laws in F lorida, and Alabama and in many other states.

W e're going to need to respond to these challenges, because we want
to empower young people , but we also want to affirm and empower
young people who are transgender and help them in their care. T hese
actions th at limit their participation in sports and activities, actions,
that -- and laws that actually limit their ability to access gender
affirming treatment of fered by pediatric specialists at our expert
children's hospitals are egregious , and so we're going to respond in a
number of different ways. One is in terms of advocacy. T he President
has spoken about this, the Vice President, the Secretary, myself, as
you said, I have visited with young people throughout the country at
gender affirming clinics, whether t hat's the Adult Children's Hospital,
Children's National Medical Center in Columbus, Ohio, and DC,
Children's National Medical Center, and many other places I've heard
from these young people.

I've heard from these families about the challenges that they'r e
facing , s o I have gone to Texas, I have gone to Florida, and I am
speaking out about this . B ut that advocacy is necessary, but it's not
sufficient. W e're also working on policy . T he last number of weeks our

Rachel Levine

Office of Civil Rights has put out for public c omment their rule and
regulation, which states that the Affordable Care Act and S ection
1557, which states that you cannot discriminate on the basis of sex,
that that includes sexual and gender minorities , t hat includes sexual
orientation, and gender ident ity. After the public comment that will
inform everything that how we look at that issue across HHS including
for HRSA and community health centers, including for CMS and for
our Medicare and Medicaid, and for insurance coverage , and so we're
looking forwa rd to the promulgation of that regulation.

I know that in other department such as the Department of
Education, they have made the same interpretation for Title IX , a nd
that has gone out for public comment. We know that the
administration is going to be wo rking on the legal front, and with the
Department of Justice which has already weighed in with a brief and
comment on Alabama's law, which actually made providing gender
affirmation treatment a felony for those pediatricians and experts at
children's hospi tals.

T hen finally, the President has called for Congress to pass the Equality
Act in terms of rights for sexual and gender minorities. W e have to
work on all of these fronts to protect the rights and freedoms for our
LGBTQI + individuals and their familie s.

Mark Masselli: Well, it is so important to focus in rules, regulations and legislation.
There's a lot that looks like it's in the pipeline that will have a
profound impact . B ut I do want to just note for our audience that
you're known and praised for yo ur mental health work , s o thank you .
C ertainly it was good news w hen the new 988 suicide and crisis
hotline began and there's a federal mandate, and 430 million
allocated to states to expand their crisis networks . B ut now there are
reports that there are 2 9 states have not introduced any legislation to
address the 988 hotline funding. What can the administration do and
can they work around the states and maybe directly fund nonprofits
to do this work . What are your thoughts?

Dr. Rachel Levine : Well, so you' re correct , m ental health challenges coming with the
pandemic have been very serious, particularly for youth, but really
across the lifespan , and t hat includes, of course, the disease of
addiction and substance use . B ut we have had a lot of concerns about
suicidal risk among specific communities, particularly young people.
Also, we were talking about the LGBTQI + community, but other
communities that have been very impacted by the COVID - 19
pandemic, the African - American community, the Hispanic community,
an d the La tino community, the American - Indian Native Alaskan
community and more .

L ast month with my associate, Assistant Secretary Delphin - Rittmon of
SAM H SA, HHS launched a new three digit hotline 988 , i t is for calling

Rachel Levine

but it is also for texting and chat. A s you , I’m sure you know,
teenagers don't call, they will use texti ng or they might use chatting.
U sing that three digit line, they will be connected to train ed
counselor s as part of the existing National Suicide Prevention Lifeline
network , and so we are continuing to work on all of these different
aspects. There has been 432 million including 105 million in grant
funding to states and territories provided by the American Rescue
Plan . W e're working to work with states and territories on the
implementation of this plan. T his is being done, again, primarily
through my colleague Dr. Delphin - Rittmon of SAM H SA , and they're
going to try to work with all of the states and all the territories to
make sure that this critically important lifeline is implemented.

Marg aret Flinter: Well, Dr. Levine, Admiral Levine, we really want to thank you for
joining us for your willingness to comment on such a wide range of
issues of great concern and interest to our country right now. It's
th
especially meaningful to us as the week o f August 7 is National
Community Health Center week. W e appreciate your understanding
and appreciation of the work that community health centers do and
how vital health care as a right for people in our country is. T hanks
also to our audience for joining us today and you can learn more
about Conversations on Health Care, and sign up for our email s at
www.chcradio.com . Admiral Levine, thank you so much again for
joining us.

Dr. Rachel Levine : Thank you , it was a plea sure.

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Mark Masselli : At Conversations o n Health Care we want our audience to be truly in
the know when it comes to the facts about health care reform and
policy . Lori Robertson is an award winning journalist and Managing
Editor of FactCheck.org, a nonpartisan, nonprofit consumer advocate
for voters that aim to reduce the level of deception in US politics. Lori, what have you got for us this week?

Lori Robertson: Tetanus affects the nervous system after bacteria called Clostridium
tetani enter the bo dy through an open wound. More than 80% of
cases occur in mothers and their babies according to UNICEF, and the
fatality rate for infants is between 80% and 100% according to the
Centers for Disease Control and Prevention . A lack of access to
hygienic deli very and umbilical cord care contributes to high rates of infection which are concentrated in South Asia and Sub - Saharan
Africa.

Although there are safe and effective vaccines to prevent tetanus, their use has been falling as have vaccination rates general ly since the COVID - 19 pandemic began. Despite the danger of this disease for
infants, a group with a history of spreading vaccine disinformation

Rachel Levine

called Children's Health Defense has promoted a video on social
media suggesting that some tetanus vaccines are actually part of a
covert plot to control population growth by rendering women of
childbearing age infertile. That debunked claim has been around since
the 1990s. The claim rest on the false notion that a hormone blocker
that would cause infertility had b een surreptitiously added to tetanus
vaccines. This claim like many long standing conspiracy theories is
based on a grain of truth.

In the early 1990s, researchers in India developed and tested a
combination contraceptive and tetanus vaccine that was desig ned to
prevent pregnancies temporarily. It did not have a permanent effect
on fertility, but hormone blockers have never been used in tetanus
vaccines available to the public. They've only been used in research.
Research on a birth control vaccine was revi ved in 2006 although
tetanus had been replaced with E. coli as the vehicle paired with the
whole hormone blocker, so t he most recent research didn't even use
tetanus. Neither the original formulation nor the more recent one
with E. coli has been produced o r distributed for general use.

As for tetanus vaccination, the World Health Organization and UNICEF
have undertaken several vaccination programs to address maternal
and neonatal tetanus. For example, UNICEF partnered with Kiwanis
International in 2010 in a vaccination effort that resulted in a more
than 40% decrease in the number of newborns dying of the disease
between 2010 and 2015. T hat's my fact check for this week. I'm Lori
Robertson, Managing Editor of FactCheck.org .

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Mar garet Flinter : FactChec k.org is committed to factual accuracy from the country's
major political players and is a project of the Annenberg Public Policy
Center at the University of Pennsylvania . If you have a fact that you'd
like checked, email us at chcradio.com , w e'll have FactCheck.org’s Lori
Robertson check it out for you here on Conversations on Health Care.

Each week Conversations highlights a bright idea about how to make
wellness a part of our communities and everyday lives . Health care
providers are forever on the lookout for that magic elixir that can cure a host of chronic ills in one step . I n the case of obesity, depression,
anxiety and stress, that elixir could be a number of steps as in taking a hike. A large study conducted b y several institutions including the University of Michigan and Edge Hill University in the UK looked at the
medicinal benefits derived from regular group hikes conducted in nature.

Dr. Sara War ber: This study had enough people following them over time tha t we could
see that these two different types of help for our mental wellbeing ,
they're operating independently, that means that if we go out in

Rachel Levine

nature for a walk, we're getting an additional boost to our mental
wellbeing .

Mar garet Flinter : Researchers eva luated some 2000 participants in a program called
Walking for Health in England, which sponsor some 3000 walks per
week across the country.

Dr. Sara War ber: There was investment in these walking groups in training leaders to
take people on walks, finding t rails that were good for people they do,
even if they had health problems.

Mar garet Flinter : Dr. Sara War ber, professor of family medicine at the University of
Michigan School of Medicine said this study showed a dramatic
improvement in the mental wellbein g of participants .

Dr. Sara War ber: Depression was reduced, perceived stress was reduced, and they
experienced more positive feelings or positive emotions. T here's been
really lovely research that's shown that when we have positive
emotions we actually hav e better health in the long run.

Mar garet Flinter : The participants almost universally reported reduced stress and
depression after participating in group nature hikes, and the effect
was cumulative over time. Dr. W ar ber says this is the first study that
r evealed the added benefits of group hikes in nature and significant
mitigation of depression .

Dr. Sara War ber: B ecause we were really interested in if you are more stressed, would
you get some better benefit from being in nature, and in fact that did
pan o ut .

Mar garet Flinter : Walk for Health , a simple guided group nature hik e program, which
incentivizes folks suffering from depression and anxiety to step into
the fresh air with others to talk about their thoughts while taking a
hike, improving their mood, reducing their depression, increasing
their overall health at the same time. Now that's a bright idea.

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Mark Masselli : I’m Mark Masselli .

Margaret Flinter: And I'm Margaret Flinter .

Mark Masselli : P eace and health .

Marianne O’Hare : Conversations on Health Care is recorded in the Knowledge and
Technology Center Studios in Middletown, Connecticut, and is
brought to you by the Community Health Center now celebrating 50
years of providing quality care to the underserved where health care
is a right not a privilege , chc1.com and chcradio.com .

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