March 11, 2022 • 43 mins
In part 2 of Next Question’s deep dive into long COVID, Katie tries to get some answers. Why is the healthcare system so routinely dismissing the experiences of long COVID sufferers? Why is it so difficult to get care? What does the long COVID community need? And what is the government doing about it? On this episode of Next Question with Katie Couric, Katie unpacks the systemic issues that are impeding patients’ care and conveys the urgent needs of the long COVID community to elected officials.
More about the groups and resources mentioned in this episode:
More about some of the guests mentioned in this episode:
- Yale Prof. Dr. Akiko Iwasaki (Twitter)
- Yale Prof. Dr. Harlan Krumholz (Twitter)
- Chimére L. Smith
- Jeanine Hays and Bryan Mason, Aphro Chic
- ABOUT - AphroChic | Modern Soulful Style
- Diana Berrent, Survivor Corps
More information on long COVID:
- The CARES for Long COVID Act
- Yale researchers unlock secrets through study of long-term effects of COVID [Yale Daily News]
- Is long COVID worsening the labor shortage [The Brookings Institute]
- Science and tech spotlight: Long COVID [The Government Accountability Office]
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi everyone, I'm Katie Curic and this is next Question today,
part two of our Long COVID Deep Dive. If you
haven't listened to part one yet, you should start there.
It's right there in your feed. In part one, we
left off with the stories of Shamir L. Smith and
Deepest Sing Too long COVID patients whose symptoms and experiences
(00:23):
in their own bodies were being dismissed by doctors and
hospital staff. Often was told that I wasn't well in
my head, I was too anxious. I was starting to
believe that the providers who are telling you was psychosomatic
and it was anxiety driven. I truly felt like, Okay, well,
(00:44):
I'm having a mental break. Unfortunately, these experiences are not unique.
I think it's been an absolute nightmare for most people.
Diana Barron is the founder of Survivor Corps, a grassroots
COVID patient advocacy group that has shifted its focus to
long COVID. Survivor Core has about one hundred and eighty
(01:08):
thousand members, and Diana says she's heard these stories of
time and time again. It became in just like other
chronic diseases, almost a modern day diagnosis of female hysteria
where patients were going to doctors and being gas lit
and being told that they had anxiety when they were
(01:28):
actually having tachiccardia, which needs a cardiologist, not a psychologist.
And yes, people are anxious. I'm sorry. If you're not
anxious in today's day and age, then you're not paying attention.
But this isn't just anxiety. This is, you know, debilitating
physical distress. Most people think that they are losing their minds.
(01:52):
They might have survived, but they are dying a slow death.
People come in good faith to try to seek help.
They encounter a health care system that's still prepared to
help them again. Dr Harlan Crumholtz, a Yield cardiologist and
long COVID researcher. Without objective measures of the illness, it
(02:13):
becomes easy for professionals to dismiss them and to doubt
even their existence beyond in someone's mind. And when I
say that is it's sort of a lack of respect
for what people tell us. It's sort of uh skepticism
about people who are reporting these kind of symptoms. So
many of these people, when they interact with the health
(02:33):
care system, are seeing people who are who are skeptical
that this is real. It's real, but we don't understand
what it is. And when when things don't meet the
patterns that we're used to seeing. We're trained as pattern
recognition professionals, as doctors. I mean, that's how we diagnose
what's this pattern. And we're bringing together multiple pieces of information,
what you're telling us, what the lab tests are saying.
(02:54):
But when we lack the lab tests, we lack imaging tests,
we lack other measures of of what's going on. Then
when we're left with what people are telling us, and
right now with the health care system, its reaction to
that is to be dismissive largely, and so we need
to fight against that impulse and we need to figure
out quickly what can we do to really understand what's
going on. We have to trust people, we have to
(03:16):
listen to them intently, and we have to try to
appreciate what it is that they're going through and and
have be a call to action for us, not just
something to dismiss, because there there is a lot of suffering. Thankfully,
for me, last year May um which was also ironically
my birthday, UM, I got a wonderful chance, a marvelous
(03:39):
chance that I don't take for granted. Tremir struggle to
find help for more than a year, but her persistence
eventually paid off and I met a wonderful Dr Lauren A.
Bobbio who changed my life. She is a black woman,
a young black woman who's just starting out her medical
career and UM. She was the very first doctor that
(04:01):
I met who said, Shamir, I believe you and UM.
I still get emotional about it today because it meant
it meant so much for me UM and so much
to me UM. Not only did it mean that I
was going to be able to develop a healthy relationship
UM with a with a doctor, but it it meant
(04:22):
that she was actually taking notes. I could see her
as she was typing, listening to me, UM, typing notes
about my condition. She was the very first doctor who
wrote a letter, a very uh sound letter to address
to my my employer, to let them know that I
was simply unable to work. And here with the reasons
why I believe that her affirming me and validating my
(04:46):
condition is also the reason why I luckily have been
able to UM be accepted. My claims for disability have
been able to be accepted. Had I not met her,
had I not fought so hard to reach her and
to get a doctor like her, had I not fired
all of the other doctors that I had to get
to her, I may not be able to celebrate that today.
(05:07):
That's a that's a huge win to me after experiencing
such such devastation in my life. I fell ill in February,
and it wasn't until August twenty through tele medicine that
I found a provider who introduced me to the term
(05:30):
long color again. Deeple was just twenty eight years old
when she started seeking answers for her long COVID symptoms.
She listened to my symptoms. She ordered panels and tests,
and I had a follow up a point now with
her to go over the results, listening to the symptoms
(05:53):
I was having, looking at the blood work UH and
the antibody result, and also comparing this to what she
was seeing in other patients. She introduced me to this
term long collar and asked if i'd heard of it before.
I hadn't. She explained that some folks were experiencing lingering
(06:15):
problems from their COVID infection, and I had an inkling already.
That's what was happening, but it was good to finally
I feel like for the first time that year, I
wasn't losing my mind. When that doctor I think she's
(06:36):
located in Florida, who met with me through an app
on my phone introduced me to long Collar, I felt like, metaphorically,
of course, not literally, metaphorically, I could breathe again. My
medical journey and experiences are unacceptable. I have gotten more
(07:02):
acknowledgement validation from providers now than I did two years ago,
but nowhere near where it should be. You shouldn't walk
out with absolutely no answers, in tears, feeling more frustrated,
like you had yet another dead end. I still walk
into some provider appointments and walk back out with that experience.
(07:27):
On the other hand, I have had a couple of
acquaintments recently where at the very least provider acknowledged I
know what wonkin of it is and I'm so sorry
you're dealing with that. So validation. That's the progress that
I've made in two years, and if if we're calling
(07:48):
that progress, I think that indicates much larger problems at hand.
The very last time I was turned away from the hospital,
I said to myself, if this is happening to me,
this type of dismissal is happening to my students, students
who I know live in nuclear houses and families, Students
(08:09):
who are always around their grandparents, their aunties, their cousins,
Students who can't articulate their symptoms or why they feel
like that. And I did not want them to to
face what I faced. So I thought to myself every day,
if I wasn't going to die, and that must mean
that I'm supposed to do something to help myself and
(08:30):
someone else live. And I just slowly started to email
anybody who would listen. I started to email JOHNS. Hopkins
Patient Engagement Services. I emailed city councilmen and women in
Baltimore City, emailed state delegates. I even email doctors who
at Hopkins were writing h journals and writing uh small
(08:54):
articles about COVID because I wanted to know, um what
I could do to help treat myself and pass the
information onto other people. While Shamir is still unable to
return to the classroom to teach full time, she has
transformed her experience into patient advocacy. She's a member of
(09:15):
multiple long COVID groups and is on the board of
Body Politic, a COVID nineteen support collective. She offers advice
to fellow law COVID patients and is often invited to
speak on their behalf. I just want to make sure
that I saved myself, and I want to make sure
I save those other people in my community. And when
(09:36):
I say other people, I mean other black people who
are poor, who are disenfranchised, who don't have the same
health care access, and who don't have the same financial
means as other people. I testified before Congress on Thursday,
April two thousand twenty one, and the purpose of that
congressional hearing was to talk to researchers and doctors about COVID,
(09:59):
but to also hear about the patient experience. It's been
the generosity of my family and my friends and those
who support my advocacy that I was even able to
live for the past two years, and so I wanted
Congress to know how serious I was about my station
in life. I was very moved by the fact that
(10:22):
many of those congressional leaders admitted that they two new
people who experienced and were experiencing long COVID. However, I've
been very disappointed nearly a year later, because there hasn't
been much movement or action on the behalf of long
COVID patients. We acknowledged it and then we left it.
(10:45):
They are not very many people in power who are
standing up for us. What I have seen and what
I will continue to champion, is the fact that smaller groups,
smaller organizations, grass root organizations, have been at the helm
of informing us about long cod and body politic alone
(11:06):
has informed so many people with their platform. It's been
groups like m E Action, which is a group about
you know, UM M E and chronic fatigue syndrome and
um other chronic illness groups that have helped to inform
long COVID patients. It hasn't been many politicians. It hasn't
been our president, It hasn't been the people that we
(11:31):
entrust with that kind of power. It's been the smaller groups,
the the everyman, the average woman, the average man that
has reached out their hands to help us. And so
that's who have led us down this road of information.
It wasn't the people in power. When we come back,
(11:52):
I tracked down some of those people in power again.
Our long COVID cohort deepest Sing, Rebecca Hogan, Liza Fisher,
(12:17):
Jack Guest, Shamir L. Smith, and Janine Hayes as far
as with a long COVID community needs from the paris
that be in this in my opinion, First, we need
financial support. I've lost everything. We've gone through our savings.
We've whittled away everything. I used a lot of that
(12:40):
go funding money to pay for Cobra. That money has
run out. Is this a forever thing? How long am
I going to have the income that supports that? As
a teacher, I was saved ten to dollars a year
and I lost all of that in the first couple
of months of my inn Second is job protection. You
(13:04):
know we're still people. We if we had jobs previously.
We need to know that our jobs will still be
available to us. When we were checking, I worked UM
at one of the top management consulting firms I was.
I was an associate partner there. I never thought I'd
(13:25):
be out more than two weeks UM and now you know,
we're going on thirteen months and I have not stepped
foot in my classroom for almost two years. I went
to nursing school to help other people, but also to
give my family a different life, financial security. There was
a structure, it was good, it was good, and it
(13:47):
was all snatched from us. Third, it's communication. Now we
we're seeing these big vaccine campaigns. We know that communication
at a large scale candy set up and delivered upon
quickly and efficiently. Why are we not talking about long
(14:08):
COVID at that same level. That is completely unacceptable in
putting people in harm's way. There are people at our
scale don't know about long COVID. They don't or if
they have heard of it, they don't know exactly how
detrimental it can be. If the information isn't out there,
(14:30):
then you don't know when you're like lost in this situation.
There is not enough information, data statistics that capture the
amount of fipock women and families who have had long
COVID who are experiencing it. Now, how can I go
anywhere to inform anybody in my community about what to
(14:55):
look for, how to take care of themselves, mental health resources,
long COVID plants. If we don't know who's being affected,
it's like being a teacher with no lesson plan. If
I have no lesson plan, I can't teach. And everybody
here in this community, just like in other communities, deserve
the right to have a COVID and along COVID lesson plan.
(15:18):
We don't think about how difficult to navigate the health
care system is. Like I'm a nurse. I'm a nurse
with a genius like you, and I'm so I'm struggling.
I'm dying. I'm struggling so hard to navigate the health
care system. And I don't even know what I'm struggling
with because like I've got all these appointments and all
(15:40):
these doctors, nothing's happening. I don't know what's going on.
I don't know. It's like I'm the middleman. I'm the
one in the middle coordinating at all. What's the point
of that if I need fourteen specialists? Am I really
capable of being a middleman? Oh? This whole long COVID
(16:02):
journey has exposed some rather ugly troots about our medical
system for folks who have chronic conditions and have suffered
for decades in some cases, without attention, without acknowledgment. Now
(16:29):
we're dealing with something on a tremendously large scale. I
hope someone is taking note that the amount of people
being affected by this will have unforeseen circumstances unless something
(16:51):
is done help the people that are sick. We are
people who contribute to helping things run. We are people
with lives with families. Help us get better. That is
why these systems were supposedly in place to protect the people.
(17:15):
So protect the people. This community deserves some answers. So
I started calling elected officials to convey some of their
urgent needs. Are you I'm good. Congressman Don Buyer, a
Democrat from my home state of Virginia, was the first
(17:36):
to bring long COVID legislation to Congress. This was back
in December of He then reintroduced the same bill in
April of What motivated you to take the lead on
this issue. We were getting lots of feedback from people
(17:56):
that I represent in northern Virginia, and we are to
pay attention to it because, um, long COVID is so fuzzy,
I mean, two hundred different symptoms, really difficult to diagnose,
but very real. It reminded me a little bit about
where we were with flon disease twenty years ago, where
(18:17):
people say, well, that's in your head, um, but we
know this isn't in your head. And it was affecting
people and really bad ways, like they were getting turned
down for disability assurance UM, but at the same time
they couldn't really go to work, so then the Employment
Commission would say, well, we don't qualify for unemployment. So
people are getting a really bad economic situations. And we
(18:39):
thought this is also at a time when the country
had divided, this would not should not be a partisan issue.
The connersman, Jack Bergman, who is a Republican from Michigan,
has been my partner on most of these things, which
is great because that way we can go forward together.
I was going to say, I think a lot of
people in the COVID long COVID community are really frustrated
(19:03):
because they feel like, you know, where's our government, why
don't people care? And you know, the symptoms can be
just terribly debilitating. And I know that the Long Haulers Act,
your bill, hasn't really made any progress for almost a year,
so a lot of people are out there saying what
the heck is going on? Where is Congress and now?
(19:25):
And and part of it is I mean, it's sad,
but the COVID has greatly restricted our ability to get
things done. We had the state of the Union address,
and almost everyone was there without a mass because of
the new CDC guidelines. So I'm hoping we'll be able
to work once longer, harder weeks and get more things done.
(19:47):
And this Carly needs to be at at the top
of the list. Senator Kane introduced a new long COVID
build a Congress. It's called the Comprehensive Access to Resources
and Education for Long Covid Act. It's legislation designed to
help people living with long term COVID symptoms. Have you
had a chance to review this and and any thoughts
(20:09):
on that? Yeah? I think it's a great piece of legislation.
And what what Senator Kane's legislation does is build on
the different iterations of the last two years you've started with.
The very morning I interviewed Congressman Buyer, Senator Tim Kane,
who himself continues to experience long COVID symptoms, introduce the
(20:30):
Care Long Covid Act to Congress. Could this be the
boost of adrenaline the long COVID cause needs to get
federal help? Is it even enough? Hey Katie, Tim Kane here,
Hey Tim Kane here, how are you? I talked with
Senator Kane to find out. Tell us a little bit
about the Care Long COVID Act and how it's going
(20:52):
to help these you know, literally millions of people who
are experiencing this, Katie. The first bit of news good
news is we got a little bit of a head
started in an American rescue plan that we passed um
a year ago in Congress because we put funding into
that bill for the NIH to do research on long code.
So they've they've started the research. But what the what
(21:15):
the care skill would do? And I want to thank
my principal House sponsors, Don Buyer of Northern Virginia, and
my co sponsors and the Senator Tammy Duckworth and ed
Market Massachusetts in Illinois. What we will do is basically
four things with the bill. First, we will try to
really have a good federal database to catalog the kinds
of symptoms and complaints that people am our. Public data.
(21:40):
Public health data infrastructure in this country was sort of
week before COVID that actually hurt us in dealing with COVID.
We want to do a very good job of gathering
the data about patient experiences. That's number one. Number two
with that data and with other studies that that hospital
Sloan Sloan Kettering and New York is doing this, and
theres are two um we we want to um basically
(22:05):
do a deep research into causes and cures. And then
the last piece of the bill, sort of the third
piece is once we've catalog the concerns and co plaints
and we do research and the causes and cures, how
can we get that information out to patients and how
can we get that information out to providers, Because again,
(22:25):
we don't want somebody who is experiencing this to go
in to a provider and be told, oh, well, you know, um,
it might be anxiety, might be depression. It's been a
tough time a lot of people were doing with tough issues.
We we really want to communicate all these best practices
and the research to the provider community and also the patients.
The more information, maybe you reduce the uncertainty a little
(22:48):
bit and that might help people deal with this. You know,
if I was experiencing severe long COVID symptoms, I might
listen to this and want to pull my hair out
because it's sounds like we need to study and really
gather data, etcetera, etcetera. And I might be saying Hey,
I love you, Senator came, but I need relief now.
(23:09):
And this hasn't even happened. This bill hasn't passed, and
you know, I'm desperate. So, um, are there more immediate
things that can be done? A lot of the patients
we talked to said they really need financial help and
some kind of job security. And I don't know whether
there's uh something we could do with the Disabilities Act
(23:33):
that might help people who are in this situation. But
they have these mounting medical bills and they have to live,
and they're they're really in dire straits. And you know,
I'm not even one of them, but I feel for
them so much because what you're describing sounds like it
will be a long time coming. With all due respect
(23:53):
and even appreciating your the attention you're paying to the issue,
we know, I think that's a fair concern. Even the
dollars that'll be allocated a year ago to research. You
don't necessarily get an answer on a research question just
like that. You know, you really have to do it
and do it right in order to come up with answers.
But there are some there are some immediate term things
(24:16):
that I do think are important one is um the
Biden administration has already put out some guidance about long
COVID as being a kind of condition that needs to
be protected by the Americans with Disabilities Act. So, for example,
the Americans with Disabilities Act would suggest that in an
employment setting, an employer should offer you accommodations if you
(24:37):
have health related issues. Folks who have long COVID need
to be given accommodations at the workplace. And again we
may need to communicate that that that out to employers
and to employees about the way to ask for those
kinds of accommodations. But there is a legal protection right
now that I think would provide some help. And then
the second thing is on the on the medical side.
(24:58):
Even as we're doing big picture research, there there are
treatments for some of the long COVID conditions. So, for example,
somebody would hear me describe when I'm going through and
would say, well, that's a neuropathy, and often a peripheral neuropathy,
tingling in the fingers and toes. That's not that unusual.
(25:19):
It comes with follows diabetes and follows other things. There
are treatments for some of these conditions already that could
probably be adapted to my circumstances. Now, somebody with a
cardiac a racing heart rate or a regular heart heart rate,
you know that's there's gonna be a different treatment. But
but because um, after effects of viruses have been known
(25:42):
before other viruses, we might be able to adapt some
of those treatments for people's conditions right now. And that's
the kind of thing where you know, I'm not gonna
practice medicine, especially as a non doctor in a zoom
call with you, but as people could go on and
say I had COVID, here are the symptoms. Okay, even
separating apart from COVID the symptoms you describe, there are
treatments for some of those symptoms, and hopefully those might
(26:06):
provide some relief to people. And what about sort of
the financial assistance for people who have lost their jobs
and have mounting medical bills. What's being done to address that?
And is the government? Does the government have a responsibility
in that arena? Well, Katie, we ultimately do, because look,
(26:26):
it's not inconceivable that um, somebody with long COVID symptoms
might eventually qualify for Social Security disability, where there would
be a financial assistance for them. In fact, I haven't
done the research on this, but I'm sure, I am
absolutely sure that there's already Americans who have been filing
and going through the disability process because of their own
(26:49):
COVID and the after effect. Is there more that can
be done on helping people deal with the financial burden?
I'm sure there is. The bill that I induced, the
CARES bill is more about the research and therapy these
in information than that. But look, this is gonna have
a huge effect on our healthcare system going forward. I
I often say that on the labor force, by the way,
(27:10):
absolutely in a time when the unemployment rates already really
low and employers are like, where do I find a workforce? Um,
I've been giving this talk where I say there will
be a day when President Biden will say the national
emergency is over and COVID is in the rear view mirror.
But the two pieces that won't go away are long
(27:30):
COVID and the mental health aspects of an American public
that seems it's almost a million people have died already.
I mean, the death told to COVID is already over
nine d and fifty thousand, and then you add the
illness and job loss and business is closed. You stack
all that on top of it, and then there's this
mental health aspect of COVID that's gonna affect us long
(27:53):
after COVID is in the rear view mirror. Both of
those things, the physical aspects of long COVID in the
mental health consequences of the last few years are going
to demand innovation and resources from all levels of government.
Are you keeping in mind this prominent issue that I
think surfaced and really in a critical way in the
(28:15):
last couple of years about racial disparities and equities in
our health care system. I know that the racism described
by the patients we interviewed for this podcast caused severe
delays and accessing care, severe delays and accessing disability insurance. So, um,
are you keeping these things front and center, the institutional
(28:39):
and systematic racism that exists in our health care system
as you kind of craft this bill and think about
what's going to be in it. Um, The answer is yes, Katie,
and we need to. I mean, as you know that
who has who has disproportionately suffered from COVID, the people
who died from COVID have been disproportionately Latino and African American.
(29:00):
The people who've died of COVID have been disproportionate in
Latino and African American, and the people who've lost jobs
because of COVID are disproportionately Latino, African American women and
young people. So this is affect that everyone that hadn't
effected everybody equally. And so as we look at at
cures and and treatments and who's getting vaccinated who isn't,
(29:22):
we have to be really specific to deal with equity issues.
It's very common in medicine where and frankly where this
is probably demonstrated the most vividly as in issues of
the maternal mortality. Yes we did. We did two podcasts
on that, and and I'm sure people said exactly the
same thing to you. I reported to my physician that
(29:43):
this was the way I was feeling. And you know,
a white mom expecting mother reporting the same symptoms as
an African American expecting mother is more likely to get oh,
that's really a concern, how can we help? And then
the African American expecting mom might get kind of fobbed
off and if not completely dismissed, not taken as seriously um,
(30:05):
even in conditions that are very, very dire circumstances. So
when you see that happening in something like the maternal
mortality space, you can see the same thing somebody going
in and saying I had COVID six months gon, I'm
so deal with symptoms in the In the profession, they
may not be taken as seriously. Many reports that they're
not taking as seriously. So we have to as we're
(30:28):
you know, undertaking getting the patient experiences and doing the
research into causes and cures, and then getting information out,
we have to build sort of an equity component into
each of those three pieces, because you can't discount um
folks experiences and you know, and when you do and
I'm sure you heard this in the maternal mortality space.
(30:48):
If I report to you an experience I have and
then you discount it, okay, well then I'll be less
likely to report it to you the next time I'm in.
And it's sort of a vicious downward cycle where then
you don't have as the provider of the information you
need to make good decisions. There's not the trust that
is built up that allow that allows for communication, and
(31:10):
then health outcomes get a lot worse. So we have
to have in in both our research and our uh
in our communication. We have to build in an awareness
of these inequities, or else the health outcomes not only
are disparate, but they get even wider if we don't
solve this. Congressman Buyer has been working on at least
(31:31):
one of these systemic issues, collecting accurate data. In January
this year, Representatives Buyer and Ianna Pressley of Massachusetts demanded
better data from the CDC on long COVID's impact, specifically
on women and minorities. So has the CDC been receptive
(31:52):
to your requests, because it does seem that a really
fulsome research studies in order. It's a it's a yes
and no. He had serve. Yes, they've been friendly and open.
On the other hand, they're a little overwhelmed. Yeah, they're
trying to keep some very different research balls up in
the air. As you know, they've been criticized for not
(32:14):
being more forthcoming with some of their data, and of
course they have responded to Dr Lensky and others that
we don't want to get science out there that's not vetted,
that could only be half right, and have people making
their own decisions. UM for an overwhelmed agency. I think
they're trying to partner with this as best they can,
(32:34):
but we've got to keep the pressure up. Would you
like to take a moment to convince this community that
you are going to stay on it, Congressmen, that they
will not be forgotten, that you will do everything in
your power to ensure that their suffering is taken seriously
and the government can try to help. Katie, Yes, absolutely,
(32:56):
we We can't forget the long COVID folks who are
gonna be with us long after we stopped wearing mask
and everybody's back in school. Um, we need to continue
to try to make Congress Um a more effective, faster
acting body. I don't think our founding mothers and fathers
ever intended for it to be as glacial as it
(33:16):
is right now. And there are many really good ideas
about there about how to make it a more responsive
legislative body. But in the meantime, while it is what
it is, people like Senator Kane and I and Congressman
Jack Bergman, I under Pressley from s who's we need
to just keep the pressure on as hard as we can.
(33:36):
A lot of long COVID sufferers are going to be
listening to this podcast, Senator and closing, what would you
say to them? Well, what Katie, I mean? The first
thing I'll say is I believe you. And there's a
lot of us up here too, because we've had this experience.
We believe both your experience of COVID, but we believe
(33:57):
that these symptoms persist. Um. We are investing dollars now
for a year in research to figure out what to do.
And I would say maybe maybe the most powerful thing
I could say is if you if you hang with
us in this and you keep communicating, will not only
figure out the answer for people who have long COVID,
(34:20):
we were likely to figure out answers that will help
people who have after effects of line disease or other
viruses or the other pandemics. They're gonna be coming, you know,
down the highway in years to come. The study that
we can do with people who have long COVID will
not only help you, but they're gonna help a lot
(34:40):
of other people who are gonna have you know, who
either had COVID, are gonna have the next virus that comes.
And that's why it's really important that we do this,
and we do this together, we can help a lot
of people down the line if we if we stay focused.
That was Senator Tim Kaine and Congressman Don Buyer coming up.
We'll have some final thoughts from our guests. I have
(35:12):
concerns that people are losing hope. I have concerns that
people are being devastated financially and that we're not moving
quickly enough to to soften that blow through policies. People
are disabled and they don't know where to go to
get evaluated and to be able to get get the
kind of support that they need. When we talk about
getting used to all of this, what it means that
(35:34):
we're getting used to mass disabling event. We are getting
used to people in their twenties and thirties effectively having
their livelihoods shut off from them, people who cannot go
back to work, whose careers are being ruined, who have
to downsize their homes, selling their cars because they need
(35:55):
to pay for medications. We are not seeing the urgency.
The hardest part of all of this the uncertainty of
it all. The unknown, I mean, besides not knowing if
and when it will ever end, the unknown physically is
really feeling like there's no adult left in our family,
in our life to take care of us. The unknown emotionally,
(36:18):
it's really scary, the unknown of what my capacity is
going to be, Like how am I going to operate
in this world. Most doctors that I talked to, all
they can really tell you is that most people wake
up and they feel better now you know, twelve of
thirteen months in. It gets more into like is this
(36:39):
a forever thing? And nobody knows. Nobody can give me
an answer to it. I don't know how long we
could survive this. If this is often, what I try
to do is to tell them to be to be
brave again. Dr Harlan Crumholtz, to hold on because I
do believe that that it's a galvanizing moment where we
(37:02):
can come together and try to learn quickly and and
look what happened with the vaccines. I mean, the vaccines
did progress really rapidly, and now it's it's something short
of a miracle that that happened. I mean, but people
came together in a in a concerted effort and tried
to solve a problem. And what we need to do
is try to do this similarly for long COVID and
(37:23):
and again in this case, I think it's within partnership
with the patients. But but I tried to tell them
that look, this this could be around the corner that
we could be able to get insights that really cracked
the case and how help us figure out what to
make how to make their lives better. And so I
think that that should light a fire under us to
say that yes, we need to be able to have
(37:43):
some blood tests or some reflections of disturbances of the
physiology that are leading to we need to understand the
underlying mechanisms. But there's another piece to this is which
we have to trust people. We have to listen to
them intently, and we have to try to appreciate what
it is that they're going through and and be a
call to action for us, not just something to dismiss.
(38:05):
What we've learned is that the number one criteria that
any medical professional can have for you is a concern
about whether or not you make it. They have to
care whether or not you're going to be okay, because
if they don't, no amount of you know, of credentials,
no amount of of education or achievement is going to
(38:26):
help you. I know that we are all different and
our experiences are different. But I am so proud to
see how many long COVID patients with limited energy, limited money,
limited resources have banded together to make people pay attention.
Two years into this and if finally ready to start start,
(38:47):
I'm ready to talk about my story and experiences. I
just refused to accept that this is where I'm at.
So my goal is to be a nurse again, and
and I don't know what that's gonna look like. I
don't know if that means that I'm just gonna be
all better and cleared to go back to work on set,
(39:07):
or if I'll have to have some you know, combinations
and limitations. I don't know any of this. I don't
know what's next. I don't know what's out there. But
I'm not gonna just stay here doing nothing. I see
myself in the future climbing Manchu Pichi I have had
and when I was in the hospital, they have this
incentive sperometer, and I wanted to climb uh Montopu too,
(39:31):
and I took a video and I said, this is
my Montu p To And I continues to think of
this entire journey as my mountain and it goes up
and down, so I'm trying to still get to the
top and so along that way, I'd like to see
change happen policy wise as far as healthcare access and
(39:56):
affordability for h chronic illness and marginalized communities. And I'd
like to just be someone who can being pactful and
effectful or yeah, effect change and support. Knowing that there
(40:17):
are others that are suffering worse than I am. UM
just makes me want to be almost a voice and
an advocate in any way I can be UM for
better care, better standards, better healthcare UM in this country
to help us get through this. I'm proud of myself,
and so that's what gives me glimous of hope. I
do this so that people who look like me never
(40:40):
have to experience, as much as possible what I experienced.
As much as we're hearing people Will try Will Will
would prefer to talk about COVID in the past tense.
You know. It's the truth is it's not over just
because we're over it. What makes COVID such a perfect
teacher is the fact that it's not going to stop.
I hope someone with the power two change something is listening.
(41:18):
Thank you to all of our long COVID patients who
spent time and energy they didn't have sharing their stories.
You've heard from deepest saying Brian Mason and Janine Hayes,
Shamir L. Smith, Liza Fisher, Rebecca Hogan and Jack Guest,
and thank you as well to Dr Harlan Crumholz and
(41:40):
Dr Akiko Iwasaki of Yale University, and to Diana Barrant
of course of Survivor Core. If you're suffering from long
COVID symptoms and are looking for help, you can start
with support groups like Survivor Core, Embody Politic will have
links to those and others in our disc option. For
(42:01):
everyone out there listening, you can do your part to
get long COVID sufferers some care and attention. Just call
your local representative and ask them to urgently pass the
Care Long COVID Act. Thank you so much for listening everyone.
If you want to see and hear from some of
(42:22):
the long COVID patients we spoke to, head to my
YouTube channel for their stories, and a huge thank you
to Lauren Hansen on our team, our producer, who puts
so much time and energy into telling these stories. Thank you, Lauren.
(42:45):
Next Question with Katie Kurik is a production of My
Heart Media and Katie Kuric Media. The executive producers arm Me,
Katie Curic, and Courtney Litz. The supervising producer is Lauren Hansen.
Associate producers Derek Clements and a Trianna Fasio. The show
is edited and mixed by Derrick Clements. For more information
about today's episode, or to sign up for my morning newsletter,
(43:08):
wake Up Call, go to Katie correct dot com. You
can also find me at Katie Correct on Instagram and
all my social media channels. For more podcasts from I
Heart Radio, visit the I Heart Radio app, Apple Podcast,
or wherever you listen to your favorite shows,
Hi everyone, I'm Katie Curic and this is next Question today,
part two of our Long COVID Deep Dive. If you
haven't listened to part one yet, you should start there.
It's right there in your feed. In part one, we
left off with the stories of Shamir L. Smith and
Deepest Sing Too long COVID patients whose symptoms and experiences
(00:23):
in their own bodies were being dismissed by doctors and
hospital staff. Often was told that I wasn't well in
my head, I was too anxious. I was starting to
believe that the providers who are telling you was psychosomatic
and it was anxiety driven. I truly felt like, Okay, well,
(00:44):
I'm having a mental break. Unfortunately, these experiences are not unique.
I think it's been an absolute nightmare for most people.
Diana Barron is the founder of Survivor Corps, a grassroots
COVID patient advocacy group that has shifted its focus to
long COVID. Survivor Core has about one hundred and eighty
(01:08):
thousand members, and Diana says she's heard these stories of
time and time again. It became in just like other
chronic diseases, almost a modern day diagnosis of female hysteria
where patients were going to doctors and being gas lit
and being told that they had anxiety when they were
(01:28):
actually having tachiccardia, which needs a cardiologist, not a psychologist.
And yes, people are anxious. I'm sorry. If you're not
anxious in today's day and age, then you're not paying attention.
But this isn't just anxiety. This is, you know, debilitating
physical distress. Most people think that they are losing their minds.
(01:52):
They might have survived, but they are dying a slow death.
People come in good faith to try to seek help.
They encounter a health care system that's still prepared to
help them again. Dr Harlan Crumholtz, a Yield cardiologist and
long COVID researcher. Without objective measures of the illness, it
(02:13):
becomes easy for professionals to dismiss them and to doubt
even their existence beyond in someone's mind. And when I
say that is it's sort of a lack of respect
for what people tell us. It's sort of uh skepticism
about people who are reporting these kind of symptoms. So
many of these people, when they interact with the health
(02:33):
care system, are seeing people who are who are skeptical
that this is real. It's real, but we don't understand
what it is. And when when things don't meet the
patterns that we're used to seeing. We're trained as pattern
recognition professionals, as doctors. I mean, that's how we diagnose
what's this pattern. And we're bringing together multiple pieces of information,
what you're telling us, what the lab tests are saying.
(02:54):
But when we lack the lab tests, we lack imaging tests,
we lack other measures of of what's going on. Then
when we're left with what people are telling us, and
right now with the health care system, its reaction to
that is to be dismissive largely, and so we need
to fight against that impulse and we need to figure
out quickly what can we do to really understand what's
going on. We have to trust people, we have to
(03:16):
listen to them intently, and we have to try to
appreciate what it is that they're going through and and
have be a call to action for us, not just
something to dismiss, because there there is a lot of suffering. Thankfully,
for me, last year May um which was also ironically
my birthday, UM, I got a wonderful chance, a marvelous
(03:39):
chance that I don't take for granted. Tremir struggle to
find help for more than a year, but her persistence
eventually paid off and I met a wonderful Dr Lauren A.
Bobbio who changed my life. She is a black woman,
a young black woman who's just starting out her medical
career and UM. She was the very first doctor that
(04:01):
I met who said, Shamir, I believe you and UM.
I still get emotional about it today because it meant
it meant so much for me UM and so much
to me UM. Not only did it mean that I
was going to be able to develop a healthy relationship
UM with a with a doctor, but it it meant
(04:22):
that she was actually taking notes. I could see her
as she was typing, listening to me, UM, typing notes
about my condition. She was the very first doctor who
wrote a letter, a very uh sound letter to address
to my my employer, to let them know that I
was simply unable to work. And here with the reasons
why I believe that her affirming me and validating my
(04:46):
condition is also the reason why I luckily have been
able to UM be accepted. My claims for disability have
been able to be accepted. Had I not met her,
had I not fought so hard to reach her and
to get a doctor like her, had I not fired
all of the other doctors that I had to get
to her, I may not be able to celebrate that today.
(05:07):
That's a that's a huge win to me after experiencing
such such devastation in my life. I fell ill in February,
and it wasn't until August twenty through tele medicine that
I found a provider who introduced me to the term
(05:30):
long color again. Deeple was just twenty eight years old
when she started seeking answers for her long COVID symptoms.
She listened to my symptoms. She ordered panels and tests,
and I had a follow up a point now with
her to go over the results, listening to the symptoms
(05:53):
I was having, looking at the blood work UH and
the antibody result, and also comparing this to what she
was seeing in other patients. She introduced me to this
term long collar and asked if i'd heard of it before.
I hadn't. She explained that some folks were experiencing lingering
(06:15):
problems from their COVID infection, and I had an inkling already.
That's what was happening, but it was good to finally
I feel like for the first time that year, I
wasn't losing my mind. When that doctor I think she's
(06:36):
located in Florida, who met with me through an app
on my phone introduced me to long Collar, I felt like, metaphorically,
of course, not literally, metaphorically, I could breathe again. My
medical journey and experiences are unacceptable. I have gotten more
(07:02):
acknowledgement validation from providers now than I did two years ago,
but nowhere near where it should be. You shouldn't walk
out with absolutely no answers, in tears, feeling more frustrated,
like you had yet another dead end. I still walk
into some provider appointments and walk back out with that experience.
(07:27):
On the other hand, I have had a couple of
acquaintments recently where at the very least provider acknowledged I
know what wonkin of it is and I'm so sorry
you're dealing with that. So validation. That's the progress that
I've made in two years, and if if we're calling
(07:48):
that progress, I think that indicates much larger problems at hand.
The very last time I was turned away from the hospital,
I said to myself, if this is happening to me,
this type of dismissal is happening to my students, students
who I know live in nuclear houses and families, Students
(08:09):
who are always around their grandparents, their aunties, their cousins,
Students who can't articulate their symptoms or why they feel
like that. And I did not want them to to
face what I faced. So I thought to myself every day,
if I wasn't going to die, and that must mean
that I'm supposed to do something to help myself and
(08:30):
someone else live. And I just slowly started to email
anybody who would listen. I started to email JOHNS. Hopkins
Patient Engagement Services. I emailed city councilmen and women in
Baltimore City, emailed state delegates. I even email doctors who
at Hopkins were writing h journals and writing uh small
(08:54):
articles about COVID because I wanted to know, um what
I could do to help treat myself and pass the
information onto other people. While Shamir is still unable to
return to the classroom to teach full time, she has
transformed her experience into patient advocacy. She's a member of
(09:15):
multiple long COVID groups and is on the board of
Body Politic, a COVID nineteen support collective. She offers advice
to fellow law COVID patients and is often invited to
speak on their behalf. I just want to make sure
that I saved myself, and I want to make sure
I save those other people in my community. And when
(09:36):
I say other people, I mean other black people who
are poor, who are disenfranchised, who don't have the same
health care access, and who don't have the same financial
means as other people. I testified before Congress on Thursday,
April two thousand twenty one, and the purpose of that
congressional hearing was to talk to researchers and doctors about COVID,
(09:59):
but to also hear about the patient experience. It's been
the generosity of my family and my friends and those
who support my advocacy that I was even able to
live for the past two years, and so I wanted
Congress to know how serious I was about my station
in life. I was very moved by the fact that
(10:22):
many of those congressional leaders admitted that they two new
people who experienced and were experiencing long COVID. However, I've
been very disappointed nearly a year later, because there hasn't
been much movement or action on the behalf of long
COVID patients. We acknowledged it and then we left it.
(10:45):
They are not very many people in power who are
standing up for us. What I have seen and what
I will continue to champion, is the fact that smaller groups,
smaller organizations, grass root organizations, have been at the helm
of informing us about long cod and body politic alone
(11:06):
has informed so many people with their platform. It's been
groups like m E Action, which is a group about
you know, UM M E and chronic fatigue syndrome and
um other chronic illness groups that have helped to inform
long COVID patients. It hasn't been many politicians. It hasn't
been our president, It hasn't been the people that we
(11:31):
entrust with that kind of power. It's been the smaller groups,
the the everyman, the average woman, the average man that
has reached out their hands to help us. And so
that's who have led us down this road of information.
It wasn't the people in power. When we come back,
(11:52):
I tracked down some of those people in power again.
Our long COVID cohort deepest Sing, Rebecca Hogan, Liza Fisher,
(12:17):
Jack Guest, Shamir L. Smith, and Janine Hayes as far
as with a long COVID community needs from the paris
that be in this in my opinion, First, we need
financial support. I've lost everything. We've gone through our savings.
We've whittled away everything. I used a lot of that
(12:40):
go funding money to pay for Cobra. That money has
run out. Is this a forever thing? How long am
I going to have the income that supports that? As
a teacher, I was saved ten to dollars a year
and I lost all of that in the first couple
of months of my inn Second is job protection. You
(13:04):
know we're still people. We if we had jobs previously.
We need to know that our jobs will still be
available to us. When we were checking, I worked UM
at one of the top management consulting firms I was.
I was an associate partner there. I never thought I'd
(13:25):
be out more than two weeks UM and now you know,
we're going on thirteen months and I have not stepped
foot in my classroom for almost two years. I went
to nursing school to help other people, but also to
give my family a different life, financial security. There was
a structure, it was good, it was good, and it
(13:47):
was all snatched from us. Third, it's communication. Now we
we're seeing these big vaccine campaigns. We know that communication
at a large scale candy set up and delivered upon
quickly and efficiently. Why are we not talking about long
(14:08):
COVID at that same level. That is completely unacceptable in
putting people in harm's way. There are people at our
scale don't know about long COVID. They don't or if
they have heard of it, they don't know exactly how
detrimental it can be. If the information isn't out there,
(14:30):
then you don't know when you're like lost in this situation.
There is not enough information, data statistics that capture the
amount of fipock women and families who have had long
COVID who are experiencing it. Now, how can I go
anywhere to inform anybody in my community about what to
(14:55):
look for, how to take care of themselves, mental health resources,
long COVID plants. If we don't know who's being affected,
it's like being a teacher with no lesson plan. If
I have no lesson plan, I can't teach. And everybody
here in this community, just like in other communities, deserve
the right to have a COVID and along COVID lesson plan.
(15:18):
We don't think about how difficult to navigate the health
care system is. Like I'm a nurse. I'm a nurse
with a genius like you, and I'm so I'm struggling.
I'm dying. I'm struggling so hard to navigate the health
care system. And I don't even know what I'm struggling
with because like I've got all these appointments and all
(15:40):
these doctors, nothing's happening. I don't know what's going on.
I don't know. It's like I'm the middleman. I'm the
one in the middle coordinating at all. What's the point
of that if I need fourteen specialists? Am I really
capable of being a middleman? Oh? This whole long COVID
(16:02):
journey has exposed some rather ugly troots about our medical
system for folks who have chronic conditions and have suffered
for decades in some cases, without attention, without acknowledgment. Now
(16:29):
we're dealing with something on a tremendously large scale. I
hope someone is taking note that the amount of people
being affected by this will have unforeseen circumstances unless something
(16:51):
is done help the people that are sick. We are
people who contribute to helping things run. We are people
with lives with families. Help us get better. That is
why these systems were supposedly in place to protect the people.
(17:15):
So protect the people. This community deserves some answers. So
I started calling elected officials to convey some of their
urgent needs. Are you I'm good. Congressman Don Buyer, a
Democrat from my home state of Virginia, was the first
(17:36):
to bring long COVID legislation to Congress. This was back
in December of He then reintroduced the same bill in
April of What motivated you to take the lead on
this issue. We were getting lots of feedback from people
(17:56):
that I represent in northern Virginia, and we are to
pay attention to it because, um, long COVID is so fuzzy,
I mean, two hundred different symptoms, really difficult to diagnose,
but very real. It reminded me a little bit about
where we were with flon disease twenty years ago, where
(18:17):
people say, well, that's in your head, um, but we
know this isn't in your head. And it was affecting
people and really bad ways, like they were getting turned
down for disability assurance UM, but at the same time
they couldn't really go to work, so then the Employment
Commission would say, well, we don't qualify for unemployment. So
people are getting a really bad economic situations. And we
(18:39):
thought this is also at a time when the country
had divided, this would not should not be a partisan issue.
The connersman, Jack Bergman, who is a Republican from Michigan,
has been my partner on most of these things, which
is great because that way we can go forward together.
I was going to say, I think a lot of
people in the COVID long COVID community are really frustrated
(19:03):
because they feel like, you know, where's our government, why
don't people care? And you know, the symptoms can be
just terribly debilitating. And I know that the Long Haulers Act,
your bill, hasn't really made any progress for almost a year,
so a lot of people are out there saying what
the heck is going on? Where is Congress and now?
(19:25):
And and part of it is I mean, it's sad,
but the COVID has greatly restricted our ability to get
things done. We had the state of the Union address,
and almost everyone was there without a mass because of
the new CDC guidelines. So I'm hoping we'll be able
to work once longer, harder weeks and get more things done.
(19:47):
And this Carly needs to be at at the top
of the list. Senator Kane introduced a new long COVID
build a Congress. It's called the Comprehensive Access to Resources
and Education for Long Covid Act. It's legislation designed to
help people living with long term COVID symptoms. Have you
had a chance to review this and and any thoughts
(20:09):
on that? Yeah? I think it's a great piece of legislation.
And what what Senator Kane's legislation does is build on
the different iterations of the last two years you've started with.
The very morning I interviewed Congressman Buyer, Senator Tim Kane,
who himself continues to experience long COVID symptoms, introduce the
(20:30):
Care Long Covid Act to Congress. Could this be the
boost of adrenaline the long COVID cause needs to get
federal help? Is it even enough? Hey Katie, Tim Kane here,
Hey Tim Kane here, how are you? I talked with
Senator Kane to find out. Tell us a little bit
about the Care Long COVID Act and how it's going
(20:52):
to help these you know, literally millions of people who
are experiencing this, Katie. The first bit of news good
news is we got a little bit of a head
started in an American rescue plan that we passed um
a year ago in Congress because we put funding into
that bill for the NIH to do research on long code.
So they've they've started the research. But what the what
(21:15):
the care skill would do? And I want to thank
my principal House sponsors, Don Buyer of Northern Virginia, and
my co sponsors and the Senator Tammy Duckworth and ed
Market Massachusetts in Illinois. What we will do is basically
four things with the bill. First, we will try to
really have a good federal database to catalog the kinds
of symptoms and complaints that people am our. Public data.
(21:40):
Public health data infrastructure in this country was sort of
week before COVID that actually hurt us in dealing with COVID.
We want to do a very good job of gathering
the data about patient experiences. That's number one. Number two
with that data and with other studies that that hospital
Sloan Sloan Kettering and New York is doing this, and
theres are two um we we want to um basically
(22:05):
do a deep research into causes and cures. And then
the last piece of the bill, sort of the third
piece is once we've catalog the concerns and co plaints
and we do research and the causes and cures, how
can we get that information out to patients and how
can we get that information out to providers, Because again,
(22:25):
we don't want somebody who is experiencing this to go
in to a provider and be told, oh, well, you know, um,
it might be anxiety, might be depression. It's been a
tough time a lot of people were doing with tough issues.
We we really want to communicate all these best practices
and the research to the provider community and also the patients.
The more information, maybe you reduce the uncertainty a little
(22:48):
bit and that might help people deal with this. You know,
if I was experiencing severe long COVID symptoms, I might
listen to this and want to pull my hair out
because it's sounds like we need to study and really
gather data, etcetera, etcetera. And I might be saying Hey,
I love you, Senator came, but I need relief now.
(23:09):
And this hasn't even happened. This bill hasn't passed, and
you know, I'm desperate. So, um, are there more immediate
things that can be done? A lot of the patients
we talked to said they really need financial help and
some kind of job security. And I don't know whether
there's uh something we could do with the Disabilities Act
(23:33):
that might help people who are in this situation. But
they have these mounting medical bills and they have to live,
and they're they're really in dire straits. And you know,
I'm not even one of them, but I feel for
them so much because what you're describing sounds like it
will be a long time coming. With all due respect
(23:53):
and even appreciating your the attention you're paying to the issue,
we know, I think that's a fair concern. Even the
dollars that'll be allocated a year ago to research. You
don't necessarily get an answer on a research question just
like that. You know, you really have to do it
and do it right in order to come up with answers.
But there are some there are some immediate term things
(24:16):
that I do think are important one is um the
Biden administration has already put out some guidance about long
COVID as being a kind of condition that needs to
be protected by the Americans with Disabilities Act. So, for example,
the Americans with Disabilities Act would suggest that in an
employment setting, an employer should offer you accommodations if you
(24:37):
have health related issues. Folks who have long COVID need
to be given accommodations at the workplace. And again we
may need to communicate that that that out to employers
and to employees about the way to ask for those
kinds of accommodations. But there is a legal protection right
now that I think would provide some help. And then
the second thing is on the on the medical side.
(24:58):
Even as we're doing big picture research, there there are
treatments for some of the long COVID conditions. So, for example,
somebody would hear me describe when I'm going through and
would say, well, that's a neuropathy, and often a peripheral neuropathy,
tingling in the fingers and toes. That's not that unusual.
(25:19):
It comes with follows diabetes and follows other things. There
are treatments for some of these conditions already that could
probably be adapted to my circumstances. Now, somebody with a
cardiac a racing heart rate or a regular heart heart rate,
you know that's there's gonna be a different treatment. But
but because um, after effects of viruses have been known
(25:42):
before other viruses, we might be able to adapt some
of those treatments for people's conditions right now. And that's
the kind of thing where you know, I'm not gonna
practice medicine, especially as a non doctor in a zoom
call with you, but as people could go on and
say I had COVID, here are the symptoms. Okay, even
separating apart from COVID the symptoms you describe, there are
treatments for some of those symptoms, and hopefully those might
(26:06):
provide some relief to people. And what about sort of
the financial assistance for people who have lost their jobs
and have mounting medical bills. What's being done to address that?
And is the government? Does the government have a responsibility
in that arena? Well, Katie, we ultimately do, because look,
(26:26):
it's not inconceivable that um, somebody with long COVID symptoms
might eventually qualify for Social Security disability, where there would
be a financial assistance for them. In fact, I haven't
done the research on this, but I'm sure, I am
absolutely sure that there's already Americans who have been filing
and going through the disability process because of their own
(26:49):
COVID and the after effect. Is there more that can
be done on helping people deal with the financial burden?
I'm sure there is. The bill that I induced, the
CARES bill is more about the research and therapy these
in information than that. But look, this is gonna have
a huge effect on our healthcare system going forward. I
I often say that on the labor force, by the way,
(27:10):
absolutely in a time when the unemployment rates already really
low and employers are like, where do I find a workforce? Um,
I've been giving this talk where I say there will
be a day when President Biden will say the national
emergency is over and COVID is in the rear view mirror.
But the two pieces that won't go away are long
(27:30):
COVID and the mental health aspects of an American public
that seems it's almost a million people have died already.
I mean, the death told to COVID is already over
nine d and fifty thousand, and then you add the
illness and job loss and business is closed. You stack
all that on top of it, and then there's this
mental health aspect of COVID that's gonna affect us long
(27:53):
after COVID is in the rear view mirror. Both of
those things, the physical aspects of long COVID in the
mental health consequences of the last few years are going
to demand innovation and resources from all levels of government.
Are you keeping in mind this prominent issue that I
think surfaced and really in a critical way in the
(28:15):
last couple of years about racial disparities and equities in
our health care system. I know that the racism described
by the patients we interviewed for this podcast caused severe
delays and accessing care, severe delays and accessing disability insurance. So, um,
are you keeping these things front and center, the institutional
(28:39):
and systematic racism that exists in our health care system
as you kind of craft this bill and think about
what's going to be in it. Um, The answer is yes, Katie,
and we need to. I mean, as you know that
who has who has disproportionately suffered from COVID, the people
who died from COVID have been disproportionately Latino and African American.
(29:00):
The people who've died of COVID have been disproportionate in
Latino and African American, and the people who've lost jobs
because of COVID are disproportionately Latino, African American women and
young people. So this is affect that everyone that hadn't
effected everybody equally. And so as we look at at
cures and and treatments and who's getting vaccinated who isn't,
(29:22):
we have to be really specific to deal with equity issues.
It's very common in medicine where and frankly where this
is probably demonstrated the most vividly as in issues of
the maternal mortality. Yes we did. We did two podcasts
on that, and and I'm sure people said exactly the
same thing to you. I reported to my physician that
(29:43):
this was the way I was feeling. And you know,
a white mom expecting mother reporting the same symptoms as
an African American expecting mother is more likely to get oh,
that's really a concern, how can we help? And then
the African American expecting mom might get kind of fobbed
off and if not completely dismissed, not taken as seriously um,
(30:05):
even in conditions that are very, very dire circumstances. So
when you see that happening in something like the maternal
mortality space, you can see the same thing somebody going
in and saying I had COVID six months gon, I'm
so deal with symptoms in the In the profession, they
may not be taken as seriously. Many reports that they're
not taking as seriously. So we have to as we're
(30:28):
you know, undertaking getting the patient experiences and doing the
research into causes and cures, and then getting information out,
we have to build sort of an equity component into
each of those three pieces, because you can't discount um
folks experiences and you know, and when you do and
I'm sure you heard this in the maternal mortality space.
(30:48):
If I report to you an experience I have and
then you discount it, okay, well then I'll be less
likely to report it to you the next time I'm in.
And it's sort of a vicious downward cycle where then
you don't have as the provider of the information you
need to make good decisions. There's not the trust that
is built up that allow that allows for communication, and
(31:10):
then health outcomes get a lot worse. So we have
to have in in both our research and our uh
in our communication. We have to build in an awareness
of these inequities, or else the health outcomes not only
are disparate, but they get even wider if we don't
solve this. Congressman Buyer has been working on at least
(31:31):
one of these systemic issues, collecting accurate data. In January
this year, Representatives Buyer and Ianna Pressley of Massachusetts demanded
better data from the CDC on long COVID's impact, specifically
on women and minorities. So has the CDC been receptive
(31:52):
to your requests, because it does seem that a really
fulsome research studies in order. It's a it's a yes
and no. He had serve. Yes, they've been friendly and open.
On the other hand, they're a little overwhelmed. Yeah, they're
trying to keep some very different research balls up in
the air. As you know, they've been criticized for not
(32:14):
being more forthcoming with some of their data, and of
course they have responded to Dr Lensky and others that
we don't want to get science out there that's not vetted,
that could only be half right, and have people making
their own decisions. UM for an overwhelmed agency. I think
they're trying to partner with this as best they can,
(32:34):
but we've got to keep the pressure up. Would you
like to take a moment to convince this community that
you are going to stay on it, Congressmen, that they
will not be forgotten, that you will do everything in
your power to ensure that their suffering is taken seriously
and the government can try to help. Katie, Yes, absolutely,
(32:56):
we We can't forget the long COVID folks who are
gonna be with us long after we stopped wearing mask
and everybody's back in school. Um, we need to continue
to try to make Congress Um a more effective, faster
acting body. I don't think our founding mothers and fathers
ever intended for it to be as glacial as it
(33:16):
is right now. And there are many really good ideas
about there about how to make it a more responsive
legislative body. But in the meantime, while it is what
it is, people like Senator Kane and I and Congressman
Jack Bergman, I under Pressley from s who's we need
to just keep the pressure on as hard as we can.
(33:36):
A lot of long COVID sufferers are going to be
listening to this podcast, Senator and closing, what would you
say to them? Well, what Katie, I mean? The first
thing I'll say is I believe you. And there's a
lot of us up here too, because we've had this experience.
We believe both your experience of COVID, but we believe
(33:57):
that these symptoms persist. Um. We are investing dollars now
for a year in research to figure out what to do.
And I would say maybe maybe the most powerful thing
I could say is if you if you hang with
us in this and you keep communicating, will not only
figure out the answer for people who have long COVID,
(34:20):
we were likely to figure out answers that will help
people who have after effects of line disease or other
viruses or the other pandemics. They're gonna be coming, you know,
down the highway in years to come. The study that
we can do with people who have long COVID will
not only help you, but they're gonna help a lot
(34:40):
of other people who are gonna have you know, who
either had COVID, are gonna have the next virus that comes.
And that's why it's really important that we do this,
and we do this together, we can help a lot
of people down the line if we if we stay focused.
That was Senator Tim Kaine and Congressman Don Buyer coming up.
We'll have some final thoughts from our guests. I have
(35:12):
concerns that people are losing hope. I have concerns that
people are being devastated financially and that we're not moving
quickly enough to to soften that blow through policies. People
are disabled and they don't know where to go to
get evaluated and to be able to get get the
kind of support that they need. When we talk about
getting used to all of this, what it means that
(35:34):
we're getting used to mass disabling event. We are getting
used to people in their twenties and thirties effectively having
their livelihoods shut off from them, people who cannot go
back to work, whose careers are being ruined, who have
to downsize their homes, selling their cars because they need
(35:55):
to pay for medications. We are not seeing the urgency.
The hardest part of all of this the uncertainty of
it all. The unknown, I mean, besides not knowing if
and when it will ever end, the unknown physically is
really feeling like there's no adult left in our family,
in our life to take care of us. The unknown emotionally,
(36:18):
it's really scary, the unknown of what my capacity is
going to be, Like how am I going to operate
in this world. Most doctors that I talked to, all
they can really tell you is that most people wake
up and they feel better now you know, twelve of
thirteen months in. It gets more into like is this
(36:39):
a forever thing? And nobody knows. Nobody can give me
an answer to it. I don't know how long we
could survive this. If this is often, what I try
to do is to tell them to be to be
brave again. Dr Harlan Crumholtz, to hold on because I
do believe that that it's a galvanizing moment where we
(37:02):
can come together and try to learn quickly and and
look what happened with the vaccines. I mean, the vaccines
did progress really rapidly, and now it's it's something short
of a miracle that that happened. I mean, but people
came together in a in a concerted effort and tried
to solve a problem. And what we need to do
is try to do this similarly for long COVID and
(37:23):
and again in this case, I think it's within partnership
with the patients. But but I tried to tell them
that look, this this could be around the corner that
we could be able to get insights that really cracked
the case and how help us figure out what to
make how to make their lives better. And so I
think that that should light a fire under us to
say that yes, we need to be able to have
(37:43):
some blood tests or some reflections of disturbances of the
physiology that are leading to we need to understand the
underlying mechanisms. But there's another piece to this is which
we have to trust people. We have to listen to
them intently, and we have to try to appreciate what
it is that they're going through and and be a
call to action for us, not just something to dismiss.
(38:05):
What we've learned is that the number one criteria that
any medical professional can have for you is a concern
about whether or not you make it. They have to
care whether or not you're going to be okay, because
if they don't, no amount of you know, of credentials,
no amount of of education or achievement is going to
(38:26):
help you. I know that we are all different and
our experiences are different. But I am so proud to
see how many long COVID patients with limited energy, limited money,
limited resources have banded together to make people pay attention.
Two years into this and if finally ready to start start,
(38:47):
I'm ready to talk about my story and experiences. I
just refused to accept that this is where I'm at.
So my goal is to be a nurse again, and
and I don't know what that's gonna look like. I
don't know if that means that I'm just gonna be
all better and cleared to go back to work on set,
(39:07):
or if I'll have to have some you know, combinations
and limitations. I don't know any of this. I don't
know what's next. I don't know what's out there. But
I'm not gonna just stay here doing nothing. I see
myself in the future climbing Manchu Pichi I have had
and when I was in the hospital, they have this
incentive sperometer, and I wanted to climb uh Montopu too,
(39:31):
and I took a video and I said, this is
my Montu p To And I continues to think of
this entire journey as my mountain and it goes up
and down, so I'm trying to still get to the
top and so along that way, I'd like to see
change happen policy wise as far as healthcare access and
(39:56):
affordability for h chronic illness and marginalized communities. And I'd
like to just be someone who can being pactful and
effectful or yeah, effect change and support. Knowing that there
(40:17):
are others that are suffering worse than I am. UM
just makes me want to be almost a voice and
an advocate in any way I can be UM for
better care, better standards, better healthcare UM in this country
to help us get through this. I'm proud of myself,
and so that's what gives me glimous of hope. I
do this so that people who look like me never
(40:40):
have to experience, as much as possible what I experienced.
As much as we're hearing people Will try Will Will
would prefer to talk about COVID in the past tense.
You know. It's the truth is it's not over just
because we're over it. What makes COVID such a perfect
teacher is the fact that it's not going to stop.
I hope someone with the power two change something is listening.
(41:18):
Thank you to all of our long COVID patients who
spent time and energy they didn't have sharing their stories.
You've heard from deepest saying Brian Mason and Janine Hayes,
Shamir L. Smith, Liza Fisher, Rebecca Hogan and Jack Guest,
and thank you as well to Dr Harlan Crumholz and
(41:40):
Dr Akiko Iwasaki of Yale University, and to Diana Barrant
of course of Survivor Core. If you're suffering from long
COVID symptoms and are looking for help, you can start
with support groups like Survivor Core, Embody Politic will have
links to those and others in our disc option. For
(42:01):
everyone out there listening, you can do your part to
get long COVID sufferers some care and attention. Just call
your local representative and ask them to urgently pass the
Care Long COVID Act. Thank you so much for listening everyone.
If you want to see and hear from some of
(42:22):
the long COVID patients we spoke to, head to my
YouTube channel for their stories, and a huge thank you
to Lauren Hansen on our team, our producer, who puts
so much time and energy into telling these stories. Thank you, Lauren.
(42:45):
Next Question with Katie Kurik is a production of My
Heart Media and Katie Kuric Media. The executive producers arm Me,
Katie Curic, and Courtney Litz. The supervising producer is Lauren Hansen.
Associate producers Derek Clements and a Trianna Fasio. The show
is edited and mixed by Derrick Clements. For more information
about today's episode, or to sign up for my morning newsletter,
(43:08):
wake Up Call, go to Katie correct dot com. You
can also find me at Katie Correct on Instagram and
all my social media channels. For more podcasts from I
Heart Radio, visit the I Heart Radio app, Apple Podcast,
or wherever you listen to your favorite shows,
Host
Katie Couric
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