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