July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA, as it’s better known—the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far will still have to go to achieve the as-yet unfulfilled promises of the ADA.
And that’s why this July, Off-Kilter is once again spending all month long having conversations with leaders from across the disability community—starting with a two-part special diving into the picture for the millions of Americans now living with “long COVID.”
For part one of that two-part series of conversations, Rebecca sat down with Lisa McCorkell, cofounder of the Patient Led Research Collaborative; Netia McCrery, education director at the COVID-19 Longhauler Advocacy Project; and Ryan Prior, a journalist, a board member of ME Action, which works to build awareness about a condition called ME/CFS, and author of The Long Haul (forthcoming November 2022). They talked about their personal illness journeys, the stories behind these three organizations, and how patient advocates with other chronic illnesses like ME-CFS are teaming up with COVID long-haulers to push for research, policy change, and more, driving a COVID-era patient advocacy revolution.
To continue the conversation into this week—to dig into the U.S. policy response thus far on long COVID, the urgent need for research, how long COVID fits into the larger conversation about disability and disability policy and more—Ryan Prior stuck around for part two of this series, joined by Kim Knackstedt, a senior fellow at TCF whose work focuses on disability economic justice, who serves as co-director of the Disability Economic Justice Collaborative, and who until recently served as director of disability policy at the White House.
Editor’s note: The Century Foundation is thrilled to have the Patient Led Research Collaborative, the COVID-19 Longhaulers Advocacy Project, and ME Action as members of the Disability Economic Justice Collaborative, which you can learn more about at dejc.org.
You can find part one of Off-Kilter’s long-COVID two-parter here.
For more on this week’s topics, Kim and Ryan put together a treasure trove of resources for our listeners (!):
And here’s a recent Washington Post article on how long COVID could change the way we think about chronic illness and disability.
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REBECCA VALLAS (HOST): Welcome to Off-Kilter, the show about poverty, inequality, and everything they intersect with, powered by The Century Foundation. I’m Rebecca Vallas. July marks the thirty-second anniversary of the Americans with Disabilities Act, or ADA as its better known, the landmark civil rights law that promised equal opportunity and economic security for Americans with disabilities. As we’ve talked about a lot on this show over the years, as important as it is to celebrate how far we’ve come in the decades since the ADA became part of the fabric of American life, every time we hit the month of July, it’s even more important to acknowledge how far we still have to go to achieve the as-yet unfulfilled promises of the ADA.
And that’s why this July, Off-Kilter is once again spending all month long having conversations with leaders from across the disability community, starting with a two-part special diving into the picture for the millions of Americans now living with “long COVID.” For part one of that two-part special, I sat down with advocates from the Patient Led Research Collaborative, the COVID-19 Longhauler Advocacy Project, and ME Action, which works to build awareness about a condition called ME/CFS. We talked about their personal illness journeys, the stories behind these three powerhouse organizations, and how patient advocates with other chronic illnesses like ME/CFS are teaming up with COVID long-haulers to push for research, policy change, and more. If you’re just tuning in and hearing part two now, you can find that episode at TCF.org/Off-Kilter or in our show archive on whatever podcast platform you listen to.
And now, to continue this conversation into this week for part two of this series to dig into the policy response thus far on long COVID and how long COVID fits into the larger conversation about disability and disability policy, I was thrilled to bring Ryan Prior from part one of this special into part two. Ryan’s a journalist and also a board member of ME Action who lives with ME/CFS. And I was thrilled to also bring in my Century Foundation colleague Kim Knackstedt to join us as well. Kim is a fellow senior fellow at The Century Foundation, and until recently, worked at the White House on disability policy. We recorded the conversation last week, synchronistically, the day after the cover reveal of Ryan’s forthcoming book about long COVID called The Long Haul. Let’s take a listen. [upbeat music break]
And now to continue the conversation, I’m thrilled to bring Ryan Prior from part one of this special into part two and to welcome in my Century Foundation colleague Kim Knackstedt to join us as well as we dig into the policy response thus far on long COVID, how long COVID fits into the larger conversation about disability and disability policy, and lots, lots more. Ryan and Kim, welcome back to the show!
KIM KNACKSTEDT: Thanks. So excited to be here!
RYAN PRIOR: Honored to be here.
VALLAS: Well, and I’m especially glad to have both of you in this conversation because you both bring incredibly deep expertise, both from lived experience of living with life-altering chronic illnesses, as well as, especially in your case, Kim, really deep policy expertise, including from Capitol Hill and most recently as the President’s director of disability policy on the White House Domestic Policy Council. I also want to acknowledge, Kim, that in addition to being a fellow senior fellow at The Century Foundation working on disability economic justice, which is I think folks know what I mostly spend my time doing when I’m not Off-Kiltering, you’re also one of my fellow co-directors of the Disability Economic Justice Collaborative, which is why it is so especially fun to have you in this conversation.
KNACKSTEDT: Absolutely. Yes. And love that you talked to our fellow DEJC members in part one.
VALLAS: And that’s really what this whole month is gonna be about, is talking to leaders from across the disability community, and in particular really, leaders from across the Disability Economic Justice Collaborative, because so many of those folks are doing such incredible work. And that’s really, really, really what I wanted to center all month long.
I also wanna just say thank you because really, this two-part series was actually your and Ryan’s kind of shared brainchild. So, just thank you, Kim, and thank you, Ryan, for this pitch because the previous conversation with Lisa and Netia was just, it was amazing. It was incredibly, incredibly powerful. And I wanna strongly recommend that folks go back and listen to that, part one, if they are hearing this episode now and coming into the conversation mid-stream and wondering, “Oh! What was said before?” So, it’s obviously incredibly important to ground policy conversations in lived experience. We do that all the time on this show to try to model that for folks in the policy world, but just wanna give a plug for that part one for anyone who has not heard it yet and is coming in now and going, “Oh! Oh, policy, hmm.”
And before we go any further, I also just wanna say, Ryan, congratulations! Because you had something really, really significant happen yesterday, something that you have been waiting to do for a little while now. You had a big cover reveal of your book, your book, The Long Haul, which is coming out in November. So, just a huge congratulations on that. How are you feeling in the wake of that big reveal?
PRIOR: Thank you so much. No, it was an exciting day, and it was just fun to kind of…an excuse to make a big post and to get a lot of feedback from across the community and patient groups and a lot of the collaborators in the book, people who were interviewed, people who worked on fact checking or editing or reading certain chapters for their expertise and others who are blurbing the book. Everybody was, it kind of came together to help retweet and repost that across social media, and that will be a good way for us to galvanize the community going forward ‘cause the book launch will be November 15th. And so, we’ve got about four months until it happens, but trying to get as many people all on the same page, our social media army, and getting as many preorders as we can.
VALLAS: So incredibly exciting. So, we’ve got more about the book in show notes. It’s called The Long Haul. You just heard it comes out November 15th. I’m really, really, really excited for this book and have loved the little previews that I’ve gotten to see from you, Ryan, because it’s just it’s such an incredibly important contribution to the conversation in such a critically important moment. My only complaint is that it’s not coming out sooner because I feel like folks need to be reading it now! But we can wait. We can wait until November. For folks who are impatient like me and wanna know more about the book now and can’t wait until November, you can check out the conversation at #TheLongHaul on Twitter to see more about what the book is all about.
But Ryan, I actually wanna start this conversation with you because in a lot of ways, the place that we need to start this conversation is actually kind of a preview of your book. And that is what we’re sort of taking the part one conversation we’ve already had, which really started with very personal experiences with long COVID and your case, ME/CFS. But now as we shift gears and start to talk more about the policy response that we need and the kind of larger implications nationally, talk to me a little bit about what the policy response has been thus far on long COVID. We’ve seen action by the administration. We’ve seen action from Congress. We’ve seen some level of action from states and localities as well. Talk to me about how long COVID fits into the larger conversation about disability and disability policy. And Kim, we’ll bring you into this next as well, because you, [chuckles] in your prior life right before this, were actually a big part of the administration’s response.
VALLAS: So, you have that kind of insider view that you’re gonna be giving us here as well, to the extent that you can. But I really do feel like the place to start here is sort of understanding long COVID as a disability, right? I think that’s really the place to start. So, Ryan, kick us off a little bit with where you think we need to start there.
PRIOR: Yeah. Just early in the pandemic—I would say February, March, April of 2020—I was in many conversations with people who are part of the ME/CFS and the broader post-viral illness communities. And we understood that based on what we have been working on for the last five or six years on policy or advocacy or storytelling around ME/CFS, mast cell activation syndrome, or POTS, or a long list of similar conditions that take place in the wake of a, I think it could be a viral infection—but also could be a bacterial infection. So, we just say infection-associated chronic diseases—that if there was going to be a wave of illness, viral illness because of the SARS-CoV-2 virus, it therefore follows directly that there would be a wave of post-viral illness. And we just we know that that takes place between, depending on the pathogen, but it can be 5 percent, up to 50 percent, depending on what type of virus and exactly how the longer-term symptoms tend to come on.
I didn’t even really underst-, even know the language “mass disabling events” back then. We did know that COVID would be a mass casualty event, and so it would therefore follow that for people who don’t die, there would be bad long-term effects afterwards. So, I don’t think anybody should be, I personally don’t think anybody should be surprised that there would be a mass disabling event following the pandemic. But that does seem to be something that requires a lot more education about and raising awareness about because some recent data says that about one in five people who get COVID are having long-term symptoms. And there’s some data from the Census Bureau even recently saying that about 7.5 percent of the population in the U.S. has some form of long COVID. So, this is a major problem.
It is being met with policy responses from different agencies, from the White House, from Congress, and many professional bodies. The American Academy of Physical Medicine and Rehab is one that is leading and coordinating long COVID clinics around the country. The National Health Service in the UK has a network of long COVID clinics. Some of this is not adequate, which we can get further into. I don’t want anybody to think that just because a long COVID clinic exists, that that means that people will get better. It is useful to see this through a disability lens because recovery is not necessarily the natural state of the human body following a virus, and the idea that someone will get sick in two weeks and then recover is fantastical. And as the surgeon general, former surgeon general Jerome Adams, who was the surgeon general in 2020, he even, you know, he tweets last night saying that one of the biggest failures of the response was the idea that this was a two-week long infection that would get better. So, you’re unfortunately seeing mea culpas from a lot of leaders because they’re seeing long COVID the way that the post-viral community saw it back in February 2020.
VALLAS: Well, and Ryan, to stay with you there for a moment. And there’s so many threads to pull on there in terms of the policy piece, and I know, Kim, you have a lot of thoughts here as well. But before we get too deep into the policy response, a lot of what your book, Ryan, is really actually gonna be an incredible contribution around and a lot of the perspective that you bring to this conversation because of how deep you’ve been in that research and writing for the book is really around understanding the history of disease and kind of what happens when we do see a significant disease outbreak and what happens in the wake.
And so, you were talking before—and this has almost become trite, it gets said so much, and yet it needs to get said a lot more just for public awareness to really rise to the level that it should be around this fact—but COVID-19 has spurred a mass disabling event, the largest influx of new entrants to the American disability community and to the global disability community (we’re talking here about the United States) in modern history. But this isn’t the first time that we’ve seen a mass disabling event, nor that we’ve seen epidemic or pandemic conditions around an outbreak.
Talk to me a little bit about some of what you learned and some of what we’re gonna see in the book. Obviously, we’ve got experience with HIV and AIDS. There are a lot of comparisons that get made there frequently with COVID-19 in terms of just social and economic and other types of implications. Talk to us about what you’ve learned for the book and some of what we need to be aware of when it comes to how this moment might be contextualized in history.
PRIOR: Yeah, there’s no shortage of things, and not just from my book, but just the dozens of other books that one can read about the history of other diseases, and particularly with advocacy movements around getting them recognized that I would just make sure people understand that the idea that there’s a contested illness or a contested disease which is not yet fully defined or not yet fully mainstreamed, that’s played out numerous times over the last couple centuries. And diseases that we think of as incredibly mainstream now were first discovered or defined at specific points in time that, you know, Alzheimer’s was defined by someone named Alzheimer, and Parkinson’s was defined by a doctor named Parkinson. You can go through. There were times when, obviously, when PTSD was not recognized as a real illness. There were times when homosexuality was recognized as a mental disorder when it’s clearly not.
So, HIV is a really prime example in many people’s lifetimes that was seen as not a major issue in the early ‘80s as HIV was emergent. And Lyme disease is another example of one that’s where the patients have been kind of in a knockdown drag out fight with some public health authorities about how to define that and how and why they need treatments. So, these are oftentimes fought along some socioeconomic or sociopolitical fault lines. And sometimes the group that has the disease might be a less powerful group. With HIV, obviously, that was the LGBT community. And one of the, you know, if you go much further back in medical history, in the 1850s, there’s something called drapetomania: It’s a running away slave disease, which, a mental disorder that slaves had that is obviously, that was simply a desire for freedom. But that gets miscategorized as a mental disorder because of who had power and who doesn’t have power. So, I just wanna say a few comments like that to foreground that this controversy over long COVID will also see some kind of sociopolitical power structures at play.
VALLAS: I love that. And I mean, we could do an entire episode on just what you started us off with and digging into all of that. I actually think we probably should. So, I’m gonna go ahead and say with that as maybe a little bit of a preview of your book, Ryan, I hope you’re willing to come back when your book is actually out in November. We can get into all of this a little bit more.
Kim, I wanna bring you in here and to dig a little bit more deeply into how long COVID fits into the larger conversation about disability and disability policy so that we can get a little bit more into some of the policy history here. It was about a year ago, a year ago this month, ‘cause it was the thirty-first anniversary of the Americans with Disabilities Act when President Biden declared that long COVID could actually be a disability. And if I’m correct, that was actually the first federal action that we saw that was specifically targeted to long COVID.
VALLAS: Talk to us about that moment, the significance of that declaration, and some of what you were involved in at the time when it came to actually working across federal agencies to try to begin to respond. Obviously, this is gonna be a long, long, long-term policy response over many, many years that you were really there for the start of.
KNACKSTEDT: Yeah. Yeah, absolutely. And I think it’s a perfect segue from what Ryan was talking about with kind of the history and the framing of long COVID and the challenges. I think I wanna actually even take a step back farther than just a year. But it was really March and April of 2021, so you think about very, very early in the Biden administration where we were having interagency conversations about COVID and the COVID response. And particularly, these were folks across different agencies specifically engaging around disability policy. And I think that’s important framing here. And the question was, how are we going to respond to COVID for disabled Americans? And what kept coming up is long COVID. There’s, we don’t know a lot about it yet, but we know it is, obviously, we’re seeing increasing rates. And then how are we going to be responding? And I have to give credit to the COVID Response Team from the White House who was very engaged in those conversations, too.
And really, there was kind of a moment after hearing from advocates, which I wanna, again, do a really big shoutout to, listening to the voices of people most impacted here, which actually also included some of the providers, which I think we should circle back to later. But there was a moment where everyone realized if there isn’t a very intentional and particular response to say that long COVID can be a disability, then it takes us in a slightly different direction, right? If it’s just a health response, we lose sort of the big-tent approach to disability. We lose a fundamental perspective of rights and health rights, employment rights, educational rights that come with actually being very clear somebody who has long COVID—which is obviously, it can be a very significant chronic illness—actually is part of the disability community.
And so, that decision was made in the spring of 2021. And then it was a very rapid, quick response across agencies to really say, well, then how do we actually do that? Pulling together cross-agency, well, I should say, pulling together one agency’s guidance is usually a fairly big lift. And then actually having multiple agencies and components within agencies work together to do something in that quick of time is a little bit unheard of. It was really a collaborative effort. And you saw the announcement on the anniversary of the ADA, thirty-first anniversary of the ADA, saying, not only do we believe there’s a fundamental civil rights piece here from DOJ and HHS that long COVID can be a disability—and that was sort of the underpinnings—but it also is seen as there’s an educational right, and this impacts children. Which that really wasn’t being discussed a ton yet. And then we saw that the Administration for Community Living said, “And if you do have long COVID and that means you have a disability, here are all the resources that come with that, and here’s how we can help you,” sort of a welcome to the disability community packet. We then also saw the Department of Labor, the Office of Disability Employment Policies say, “And you may need accommodations on the job. If you can continue working, here are some things that can help you.”
And so, that was just a really important moment that I think it got picked up. I think it was paid attention to. But I think that actually, the federal government coming out and saying in the first federal action that long COVID can be a disability and then everything falling in place after that really set their trajectory of a lens of disability across all these policy areas and policy actions that has kind of led us to the point of now having this presidential memorandum, a whole of government response, and a really collective effort of actually working with advocates in an intentional way that is making some progress. So, I’m not saying everything’s done, but making progress.
VALLAS: Well, and just to get nerdy for a moment, because if there is one thing that you are very good at being nerdy about, Kim, it is how the federal government actually works because you’ve spent so much time inside government. And I mentioned before, before being in the administration, you spent many years on Capitol Hill. You were a Senate staffer. Before that, you were a House staffer working with committees. And a lot of what you were doing was really bringing that disability lens across the work because that was not something that was happening at the time.
VALLAS: Yeah. And so, folks might be hearing this and going like, “Okay, presidential memorandum, inter-agency work?”
VALLAS: “What does any of this really mean?” But just to put this in context, what you’re describing is not something that had happened before, right?
VALLAS: I mean, even just zooming out from the COVID-19 pandemic and the obviously incredibly unique circumstances, I mean, the federal government working together in this way is not usually something that happens on any issue, and it’s certainly not something that had happened before when it came to disability policy. And so, that’s really what you’re describing, is a new way of getting the federal government to work together that maybe should be how it already works all the time, but actually takes a lot of handholding and coordination.
KNACKSTEDT: Right. Yeah, absolutely. And I think kind of a passionate response, right? There’s, I think there’s more people than the public maybe recognizes that either are people with disabilities in the federal government or have siblings with disabilities, a family member impacted, and there’s a lot of people that feel very passionate about these issues. Maybe they have chronic illness, maybe they, you know, whatever. Maybe they were impacted by disability at a point in their lives. ‘Cause I think, as many people say, disability is not a linear path for everyone. And so, actually having all of those folks really say within their agencies, “We’re gonna get this done. We’re gonna come together,” and actually having to elevate all the way up to the White House and have the President say in front of a bunch of press, in front of a bunch of members of Congress, “This is important, and it’s gonna continue to be important, and pay attention,” was actually a really significant and historical moment.
VALLAS: And obviously, made even more significant by the fact that that declaration came on the anniversary of the Americans with Disabilities Act as a statement. It was really the President saying, “Welcome to the disability community,” to folks with long COVID, in case there was any confusion about whether they “belonged” or “deserved” to be there, to use sort of language in big scare quotes, given the history of how chronic illness has not always been understood to be part of the disability community, something that’s also a very personal conversation for you as someone with chronic illness and for me as well.
KNACKSTEDT: Yep. Absolutely.
VALLAS: So, I wanna get into some of the specifics on the federal policy response that Ryan and you started to allude to in kind of broad strokes. We’ve seen sort of an arc of policy response to long COVID at multiple levels of government. We also have a lot that still needs to happen. And in some ways, it’s really been just the beginning of a response that we’ve seen. A lot of that has to do with how little we actually know about long COVID at this point, something that I know you’ll both talk about as this conversation continues.
Ryan, going back over to you, talk to me a little bit about some of what we’ve seen so far, and actually, Kim, I think the two of you are gonna tag team some of this. We’ve seen multiple installments of legislation. That’s probably the stuff people are most familiar with, the big kind of COVID response bills. But we also have seen some real slowness in some of the key responses that we need to see from federal agencies. So, I’m not sure which of you actually wants to start there and pick the ball up from there.
PRIOR: Yeah, I’ll start that on one part of the story is the response in framing this as a disability and the ways in which a number of agencies sprung to action. I think that’s a very positive story, and it’s a very validating story for a lot of people who have not returned to health that it’s been less rosy, I suppose you could say, with the way that the NIH has been handling it. There was a $1.15 billion allocation that was made by Congress as part of the stimulus bill that came out in early 2021. And when we got wind that this $1.15 billion initiative to research the long-term effects of the coronavirus was going to occur, a lot of us were pretty excited about it. My hope was that I would spend a lot of my time reporting on that, that I would be spending a lot of time in depth with that. But the slowness with which that rolled out made it difficult to align that with the timeline that my publisher had for the book.
But that’s also like a larger metaphor for the difficulty of organizing large-scale scientific initiatives that to NIH’s credit, it put together what it calls the RECOVER Initiative in record time, doing something in a number of months that might’ve taken a number of years to do otherwise. However, it was still considered quite slow by the standards of long-haulers who were disablingly sick and not able to return to school or return to jobs or able to care for their families, and people who are desperately hungry to be part of clinical trials, and we desperately want treatments now. And now we’re two years into the pandemic. Many, many long-haulers have been sick for two years. And what the RECOVER Initiative feels like to them is that it’s just spending their time studying their…what the illness looks like, what their symptoms look like, determining that they do have symptoms, that long-haulers are, in fact, experiencing a sickness. But they could’ve easily told anybody that 20 months ago. So, that there’s some frustration there with the ways in which that’s being rolled out.
And then a part of it comes, the RECOVER Initiative, it stands for Research in COVID to Enhance Recovery. So, there’s always acronyms that come together to try to spell something. The idea that the natural state of the body is that it would recover from illness is kind of problematic. It’s built into the assumption of this billion-dollar initiative. So that in one of the questions that the researchers are asking is, “We’re setting out to study how long it takes people to recover.” But another question could be is, “Why are they disabled?” Which I think a lot of us in the post-viral community would be more interested in learning because we know that recovery is probably not just naturally going to happen.
And so, there’s a couple other major critiques that people have had that the post-viral researchers who have spent 20 or 30 years looking at these types of problems haven’t been included in this NIH response. Additionally, recruitment has been slow. This was supposed to be tens of thousands of patients enrolled, and that’s been slow to get off the ground. And then, as I mentioned earlier, just clinical trials, which many patients hoped would be the first thing to happen, those are still in the offing. And we won’t see results from those for more than a year from now, most likely. And then whether or not interventions get approved or authorized seems very far off.
And so, for people who feel like science solves problems, we’re just not quite seeing that here, and many patients feel that they learn more from online support groups than they do from any science that’s coming out. And so, many patients feel that they’re left to fend for themselves. And a major theme of my book is the value of these peer support groups to people to figure out things themselves, rather than having to rely on science to solve the question over a 10- or 20-year cycle with enough funding. This may get solved, but in the one- or two-year framework, people kind of have to advocate for themselves.
VALLAS: I love that. And there’s a lot more, I think, that could be said on the note of kind of what’s been missing, what’s been delayed. That’s obviously been a lot of what we’ve heard from folks who have been not feeling like they’ve necessarily been heard or responded to. Ryan, I feel like that’s a lot of what we actually heard from Lisa and Netia in the part one of this series. I mean, each of them was speaking about how they felt like they were actually getting more information from patient kind of peer support groups than they were necessarily from the federal government. So, obviously, a lot of what you’re describing, right? These have been kind of major themes throughout the long COVID community.
Kim, I wanna bring you back in here next and talk a little bit about what we’ve been seeing on Capitol Hill when it comes to policymakers seeking to respond to what folks with long COVID are saying that they need. We’ve seen a number of members of Congress start to say, “Hey, we need legislation on this. We aren’t done with legislating in response to this pandemic, and we need to really, actually target some of our policy response to folks with long COVID specifically.” And we’ve actually seen a number of members working very closely with the disability community and with the long-hauler community to try to craft some of the response. I think the two of you are actually gonna tag team some of this conversation. And Ryan, I know you’ve got a lot to add as well, but Kim, kick us off. What have we been seeing on Capitol Hill when it comes to legislation that specifically addresses the needs of COVID long-haulers?
KNACKSTEDT: Yeah, absolutely. We have three really core bills that’ve been introduced. So, we have a bill from Tim Kaine that’s called the Comprehensive Access to Resources and Education for Long COVID Act or the CARE for Long COVID Act. It’s a little easier to say. We have Ayanna Pressley, who has a bill on targeting resources for equitable access to treatment for long COVID or the TREAT Long COVID Act. And we have Representative Beyer, who has a COVID long-haulers act as well. And so, these three bills each do something slightly different, and again, like you said, really have done a nice job of actually working with advocates, kind of listening to what’s needed, thinking about kind of the three pillars that’ve sort of been identified by the administration as areas of need, which include really making services and supports available, which is pillar one; really advancing the nation’s understanding of long COVID, pillar two; and then really delivering high quality care for individuals experiencing long COVID, we kind of call that pillar three. Each of these bills does little pieces of it, and I think that’s really important.
Senator Kaine’s bill does a nice job on education and dissemination of resources and really looks at advancing that research, Representative Pressley’s bill really works to increase access to services, and Representative Beyer’s bill, again, just kind of same two pillars as Senator Kaine’s bill, just slightly differently. And so, those really are the start of The Hill’s response. Those bills haven’t been, well, I should say, since we don’t actually have a COVID package at the moment moving through Congress for any funding, we don’t see those bills moving in that way right now, which is unfortunate. But hopefully, these give us the basis of something we can work with, how we can kind of move the ball here. We do need resources. We do need funding for some of this. And I think really zeroing in on some of that provider education and making services and supports available are really some of the key pieces. I don’t know, Ryan, if you wanna jump in more on that.
PRIOR: Yeah, no. I think these are all important provisions for additional research and especially just Senator Kaine’s bill does a good job of mentioning, you know, it has language in there talking about PASC—which is post-acute sequelae of COVID, which is a peer chronic term for long COVID—PASC and related conditions. So, it calls out several known post-viral conditions that have been neglected, ME/CFS and POTS included. So, I find that language welcome in that bill. And a note about the Long Haulers Act with Representative Beyer that, it’s a lot of important provisions in there about data harmonization. And I apologize for the sensational, salacious, hot-button topic of data harmonization, which sounds boring, but it really, there’s a lot there in terms of we have a fragmented health care system. It’s a little bit easier to do this kind of research in certain European countries where there’s a single payer system. And so, we don’t have, we have a fractured data infrastructure because of the various systems in place in the U.S. And so, some of that data harmonization stuff can really, could really matter, although that may seem in the weeds.
VALLAS: Ryan, you never need to apologize for talking about the need for better data collection and data synchrony on this show.
VALLAS: This is an important topic! And we have some nerds who listen because folks who listen to the show understand that we need decent data if we’re ever gonna be able to make good public policy. So, no, I really appreciate that point, and it’s actually something Kim has been part of a conversation about on this show before, because it is so especially important when you talk about how the federal government even keeps data on people with disabilities. Because it’s different across agency to agency to program to program in many cases.
KNACKSTEDT: Well, and if I could even jump back in on that point for a moment. And Rebecca, you know that my next tattoo will probably be this, but I firmly believe that we can’t make good policy if we don’t have really good research and data, and then we also have a good understanding of practice and what’s actually happening on the ground. And I think of those three pieces as kind of these bi-directional arrows all impacting each other. And I think that’s actually a little bit of how our long COVID, you know, the trajectory of where we need to go needs to be thinking about. Are we actually listening to patients? Are we giving the education to providers? Do we actually know enough? Are we asking the right questions? And then how is that all impacting policy? And is policy appropriately impacting those pieces? And if we’re not actually thinking about all of those elements together, I think we’re not moving in the right direction.
VALLAS: And just so folks can visualize what that tattoo is going to look like because they’re probably going, “Well, that was a lot of words. How is that a tattoo?” Well, okay, so it’s a triangle. So, visualize a triangle.
KNACKSTEDT: [chuckles] Yeah.
VALLAS: And we have research on one edge of that triangle, we have policy on another, and we practice on the other. So, that is the tattoo, [laughing] that Kim is getting.
KNACKSTEDT: It’s an equilateral triangle, to be clear, yeah.
VALLAS: Yep, to be very clear. Because that nexus of research and policy and practices, that is the way to Kim Knackstedt’s heart, just in case you were wondering.
KNACKSTEDT: It is.
VALLAS: We got Ayanna Pressley on this show before saying policy is her love language. Well, I feel like we found your [laughing] love language, Kim.
KNACKSTEDT: Yes, it’s true. It’s true.
VALLAS: It has three, it’s a three-legged stool.
So, Ryan, I wanna turn back to you because as, I mean, as we’re talking about the nexus of research and policy and practice, nerdy as that sounds, I mean, that’s really actually kind of the anchoring theory of change of this thing called the Disability Economic Justice Collaborative, which I mentioned up top Kim and I are both involved in. We’ve talked about it actually on this show before, and we even dedicated an episode to the launch of that collaborative. But just to mention for folks who might not be familiar with it, what it is, it’s a new way of trying to make and advise on public policy in this country. It isn’t particularly new necessarily when it comes to how social policy and economic policy gets made in other nations, but here in the United States, it is kind of a novel, revolutionary concept to have people with disabilities be considered [laughing] when we make economic policy! I’m laughing as I say that because it might sound absurd on its face, given that one in four American adults live with disabilities.
But to try to change that up a little bit and instead of having disability be an afterthought or just kind of its own little silo that is never integrated into overall policymaking for this country, the Disability Economic Justice Collaborative is striving to bring together, and is bringing together, dozens of leading think tanks and multi-issue research groups who care about economic policy and who influence and often write economic policy together with leading disability organizations, including long COVID groups like the folks that we heard from in part one of this series: the Patient Led Research Collaborative and the COVID-19 Longhauler Advocacy Project, and the organization that you’re affiliated with and actually serve on the board of Ryan, ME Action, which does not work with COVID long-haulers, but actually works with folks with ME/CFS to raise awareness and to advocate around that condition. Talk to me, Ryan, about why it is so incredibly important that long COVID groups and that groups like ME Action are part of this collaborative, given that this collaborative is seeking to really change the face of economic policy by bringing a disability lens across it. Talk a little bit about why you guys joined and the significance of those groups’ leadership at this time.
PRIOR: Yeah, no. I was very excited when you reached out a few months ago asking ME Action to be part of this, because I’ve, you know, having been involved in this work for a number of years, that one of the key issues with getting this ME/CFS elevated was just really like getting any disease elevated to the level that when you meet with the people on The Hill to try to advocate for funding or specific provisions to help your particular group, you risk being seen as an orphan disease, which basically means a rare disease, or you risk being isolated or siloed. And so, your political power as a disease group is related to the big tent coalition that you’re part of. And so, I was frequently an advocate in our board meetings for joining up with Dysautonomia International, for instance, which is, dysautonomia is a term that describes a lot of these, POTS and similar illnesses. Insofar as we could join any other larger coalition of disease groups, our needs are more likely to be heard. So, joining in with essentially the largest possible coalition, which would be Disability Economic Justice Collaborative, seemed to be the longest, the best long-term strategic move that we can make. It also was a great way for us to elevate our set of ideas, which we know to be true that post-viral illness is, that’s what ME/CFS looks like, and that’s what long COVID looks like.
And I’ll just make another point that when we would go have meetings on The Hill, we were oftentimes instructed to talk about our illness through the lens of national security. So, you would say, “This matters because it affects X number of service members” or “this is going to be a threat to our nation.” And it was more of a security— Economic security is something I like more than having to talk about it through national security because whether it affects people in the military was less important to me than the fact that it just affected people in general. And so, I would just highlight that economic security angle as being something I feel is refreshing, actually.
VALLAS: Well, I appreciate that. And also, I feel like I love your candor in describing a little bit of how the sausage gets made sometimes, right? I mean, obviously, you’re talking about being advised to bring up the connection to service members in terms of the hierarchy of disability. If you’re a person with a disability and you are a veteran or service connected in some way, you’re a little higher on the ladder, right, to be very, very cynical about it. We’ve talked quite candidly about the hierarchy of disability capital on this show before with others like Rebecca Cokley, who gets very real talking about this stuff.
Kim, I’m gonna bring you back in to kind of pick up on that thread in any way that you want to, but also to sort of talk a little bit. Here we are in this kickoff episode for July, for often, as it’s called in the disability community “ADA month,” right? ‘Cause we sort of, we mark the ADA anniversary all month long. But here we are in the ADA month and talking about the Collaborative and what it’s seeking to do while we’re also talking about the unfinished business of the ADA. Talk a little bit as well about why this moment of reckoning, not just with the COVID-19 pandemic, but with millions and millions of people newly disabled by long COVID, why that makes what the Collaborative is doing and seeking to do, which has a lot to do with the unfinished business, especially the unfinished economic security business of the ADA even more urgent now when it comes to a conversation about how far we’ve come in the 32 years since the ADA but how far we still have to go.
KNACKSTEDT: Yeah, absolutely. Yeah. I think long COVID has really caused the disability community to confront the importance of including the chronic illness community in an important way. I think for many of us with chronic illnesses, we weren’t really always sure if we actually fit in the disability community. There was a little bit of hesitancy. I think it’s actually been maybe in the last five to 10 years that there’s been a little bit more of a all-is-welcome and a little bit of breaking down of some of those silos and barriers, which is really important. And then now, I think, as we see long-haulers really having to go through the struggles that many of us have gone through, it’s really taking, as I think many in the community say, that big tent approach to disability in an intentional and thoughtful way.
Myself, I often am spending hours battling with insurance companies trying to get my infusion medication. It’s like some of that shared not only commiserating with one another, but also shared wisdom of how do you actually navigate? How do you choose the insurance company that’s gonna actually provide you what you need? Finding doctors that actually trust you and believe in you and sharing who those doctors are is really, really important. And so, I think from a sense of actually creating a community that has belonging and isn’t trying to just pit resources against each other, that’s really one piece of it, of just the inner workings of the community, the disability community, and really looking ahead of what do we need, how do we work together to actually accomplish our goals and really achieve the goals that we have internally?
And then looking at the unfinished business of the ADA, I think oftentimes, and you’ve said this many times, Rebecca, we get to July, and it’s time to look at really the four outcomes and say, “Ah! We haven’t made it.” And then we move on to August, and it’s kind of forgotten. I think it’s a time for us to think about in particular economic self-sufficiency and really that economic security goal. And when we say, okay, we have so many people that are really having to rethink work, are having to rethink their health care, how do we as an entire community think about really advocating together and fighting together for long-term policy change and long-term narrative changes that actually allow us to achieve economic security all together? So, I think it’s a little bit of a reckoning for everyone and allows us to really commit to what economic security actually means. And then how do we allow that to actually change our economy in a positive way?
VALLAS: Yeah, and I love that you brought up that big tent approach, right? Because I mean, that’s really the evolution we’re seeing that is itself the antidote to the crabs in a barrel as Rebecca Cokley often describes the alternative of fighting only for oneself and one’s hyper-segmented fractal of the overall disability community, sometimes at the expense of or even infighting with others within the community. That’s unfortunately been a lot of the history of how advocacy has looked within and along these issues.
VALLAS: You have also spoken a lot about this and have actually seen it firsthand on The Hill. And a lot of that has really been driven by the structures of available federal funding, which have set up sort of a divide and conquer strategy that many have unfortunately been sort of backed into to pursuing to try to fight for their constituencies and their loved ones. This big tent approach that we’re really now seeing as sort of an outgrowth of and a paradigm shift in this COVID era, I’m really thrilled to see, I’m really thrilled to be playing some small role in.
And Ryan, I think bringing you back in here as well, as we start to see advocacy shift and organizing shift in even just the way that people within the disability community understand who’s part of that community, right, who gets that welcome packet, and that folks with long COVID, folks with chronic illness are part of the disco, as we often lovingly call it. The question then, I think, in the minutes that we have left for part two of this conversation—and like with part one, I wish we had two hours instead of one hour for this one because there’s so much more we could get into, but we will do with what we have—we have to talk about where we go from here. So, you guys have, I think, really brilliantly brought us up to speed on what we have seen so far, some of what has been missing, some of what has been a source of some level of frustration with delay. But talk to us about what’s next and some of the ideas that are out there percolating, as well as some of the calls from the long-hauler community, some of which we’ve heard from Lisa and Netia, which are starting to get some level of attention, or if they aren’t yet, should. And Ryan, I think a great place to start there is actually it’s a topic that you have written about for The Century Foundation, and you’ve actually got a very specific policy idea.
PRIOR: Yes. And this, I’ll credit the Patient Led Research Collaborative for pointing this out to me, and I think this is something that we need to elevate, is the idea of a federal short-term disability benefit. And just a couple of basic reasons, I think it’s pretty simple and pretty useful that we do offer in this country and in many countries a long-term disability benefit, that if you are essentially permanently disabled, you can get benefits through Social Security. That doesn’t really exist at the federal level as a policy for people who are disabled for a short period of time. And I believe that for long-haulers, especially if you have an opportunity to rest, you’re more likely to recover. And if we give people a carve-out where they are allowed to rest for a certain period of time, if they’re disabled short-term, they can take this opportunity rather than being disabled long-term, potentially, if they force themselves to work and force themselves to make money to live, and then they ultimately kind of cut themselves at the knees by curtailing their recovery process. So, I think there’s a lot of benefit for the short-term disability policy at the federal level.
VALLAS: And just the idea that when the leading recommendation from providers, from doctors, is rest. You need to rest when you have COVID! I mean, that should be, that’s often the leading recommendation for many things, but that you need to be able to rest so that you can actually give your body time to recover. I mean, that’s…. But then people aren’t able to do it because economically, it isn’t actually on the table as an option. I mean, this, obviously, this is very parallel to the paid leave conversation in this country, right, and to birth of a child and many other circumstances where what would be right for your health is in conflict with your economic reality. And that’s really what you’re getting to the bottom of.
PRIOR: Mmhmm. People with long COVID frequently experience post-exertional malaise, so they have a relapse of symptoms after minimal exertion. So, they have to pace themselves, and if they have an opportunity to pace themselves, they won’t have these post-exertional collapses. Their overall baseline might improve. But yeah, it requires moderate activity at most. And exercising your way out of it is foolish, and that leads to some long-term consequences.
VALLAS: It’s such an important conversation, and it’s one that really does warrant, I think, a much larger space than just this quick mention that we’re giving it now. But just as someone who’s worked in the social insurance space for a long time, including as a lawyer representing people who had been denied benefits and who were facing all the kinds of bureaucratic hoops to try to access Social Security Disability Insurance and SSI in particular, we have an all-or-nothing disability system in this country. That’s what we have. And if you are not gonna be helped by Social Security Disability Insurance or SSI, which by the way, is the vast majority of people with disabilities, because of how strict that disability standard is that those programs share, you’re out of luck. There really isn’t anything else for you. And this is a conversation that a very small number of people have been trying to start for a number of years. But, boy, is now a moment to take that seriously and start to talk long-term about how we might finally bring our social insurance system up to date so that we can not be leaving behind so many people that to say “falling in the cracks” is like a laughably inappropriate and out-of-scale metaphor.
Kim, there are a bunch of other ideas as well that I wish we had more time to get into in a ton of depth but that definitely deserve a mention. What do you wanna put on the table in terms of some of what is next and needs to be next for the policy response, but also for awareness building and research and education?
KNACKSTEDT: Yeah, absolutely. I think the one thing that I continue to think is probably most needed is actually a navigators program for long-haulers, I think. And not just for kind of Social Security benefits, right, but actually, for all federal benefits that somebody might now be eligible for really to help navigate. I think it’s an incredibly overwhelming moment to all the sudden realize that your entire life may have maybe changed by this chronic illness and recognizing what you might now be eligible for, realizing that all of these different programs have different qualifications, different forms, different processes. And having someone actually help kind of move you through that process and support you through that doesn’t really exist right now. And create a one-stop shop web page really puts the burden on the individual to go and then still navigate through that, but actually having a program that does a little bit of the outreach and helps folks really would help people in the moment when really, they’re kind of in the most crises. And so, I think a navigators program would be one of the things that I think could be most beneficial. And then the only other piece would really be educating primary care doctors and making sure specialists understand. Again, as we mentioned before, having a doctor that listens to you and believes you can be the most impactful thing as you’re going through this.
VALLAS: Yeah, hugely important. I’m really glad that you brought up the navigators idea, which we’ve seen a lot of policymakers talking about in different contexts. But when it comes to a huge new influx of folks, all of whom need to get up to speed really fast on what are the available resources out there, I mean, it just, it makes so much sense that something like a navigators program could really be the thing that would help people get smart quick on at least what’s out there, even though the set of programs and policies that we have in this status quo we know are not enough, at least being aware of what does exist seems like a really kind of a piece of low hanging fruit, one might say.
So, Ryan, I’m gonna give you one last shot at putting anything else on the board that you think is important in terms of what needs to come next. It can be policy. It can be around research, awareness. Kim was starting to talk as well about provider education. What else do you wanna get in the board? And then Kim, you’re gonna get the final word.
PRIOR: Yeah, no. We’ve, in all of this stuff, a few major things: a provider network and Centers of Excellence. Which is a Center of Excellence would be where research and clinical care takes place under the same roof, which is translational medicine. It’s a two-way street. When you have these sort of centers for different other diseases, including multiple sclerosis, you get a lot done. These are major, major hubs of care and innovation. So, Centers of Excellence are a very key things for post-viral illness. I love the idea of doing a long COVID dot org resource page, which could really help make people feel validated but also help direct traffic and get them to the services they need. And in the end, it really comes back to listening to patients. William Osler is the father, Sir William Osler, is the father of medical education in the 19th century. He talks about listen to the patient, and he will tell you what the disease is. And in our age of advanced diagnostics, sometimes that gets a little bit lost. But the patient’s voice needs to be centered in each of these policies. And so, I’m excited that many agencies are seeing that.
VALLAS: I love that, and I feel like you could’ve just said, “Listen to patients” and ended the sentence right there, right? Because that itself would be revolutionary when it comes to, unfortunately, how a lot of folks get treated and get disbelieved or gaslit, as we were also hearing a lot from Lisa and Netia and also from you, Ryan. And I know that’s been your experience at different points as well, Kim, and it’s still mine as I try to get some kind of decent diagnosis 19 years into my own journey, which it’s been a while since I’ve talked about it at any length on this show, but which longtime listeners have heard me talk about at different points.
Kim, in the final minute or so that we have as we wrap up this two-part series, where do you want to leave us? I feel like part of what we probably should do is to plug for folks who are themselves experiencing trying to navigate life now and the way forward with long COVID, where folks might go for some level of resources. But where are you hoping that we are a year from now, a couple years from now, as we’re looking back on this particular moment, if folks are actually listening to this conversation and taking some of this advice?
KNACKSTEDT: Yeah. That’s the big question of what happens next. I definitely challenge the Biden administration, my former colleagues, to really think about the power of the report that they have coming out August 3rd and what impact they can make. I think they should use every lever they have possible to really try to educate this country, the public, doctors, nurses, everyone that is really engaged with individuals who have long COVID to actually, again, as Ryan said, listen to patients and really accept that long COVID is here to stay, it’s not going away, and that it is part of our lives. I think there’s also a piece that the pandemic isn’t over. And it isn’t just the flu that comes and goes because long COVID is around. And I think that that needs to be part of our awareness and our conversation and that we need to continue having those conversations.
In a year from now, I hope that we have more research, we can make better informed decisions, and that we have a better understanding of how we can actually get individuals with long COVID to multidisciplinary clinics and get them the care that they need in a better way. And I hope we also have a better understanding of benefits, and we can direct folks to where they need to go. And so, I think that is the vision. But I really think that the administration needs to really use their full power to do whatever they can here and not let this moment go.
VALLAS: Well, and I’ll throw in as well and up the ante that I hope, ‘cause, you know, while we’re manifesting—
VALLAS: —while we’re manifesting, let’s throw in some other good things we wanna see. I am really hopeful that a year from now, we’ve seen strong bipartisan interest in investing in this community and in investing in this response. Because this is not something that only progressives or only Democrats are grappling with, this is something that, long COVID, that is impacting communities across this country and people of all political stripes and ideologies and perspectives and views and backgrounds. This is not something that we hope is just something that progressives and Democrats are going, “Yes” and shaking their fists and saying, “We must do more!” Which is why a year from now, we will have seen—we’re just gonna say it into existence—bipartisan awareness grow, not just among voters, but among policymakers as well, given the fact that we’ve got some elections coming up, and we’re not entirely sure who’s gonna be in power. We definitely need to see continued action and serious action centering the voices of long-haulers, no matter who is in charge politically. But it is a reminder that voting’s really important, given that there’s a lot at stake in terms of the policy response. So, always a good plug to vote.
Kim Knackstedt is a senior fellow at The Century Foundation and one of the co-directors of the Disability Economic Justice Collaborative. Most recently, she was the director of disability policy on the White House Domestic Policy Council under President Biden. And Ryan Prior, joining us for the second week in a row of this two-part series, is a journalist, a board member of ME Action, and is the author of the forthcoming book about long-haulers and the COVID pandemic called The Long Haul. It’s coming out in November, and you can find out lots more about a lot of the things we’ve been talking about in our show notes. We’ve got a hefty show notes to go along with this episode because there’s so many resources that our brilliant guests have put together for you! So, definitely check that out at TCF.org/Off-Kilter or in whatever podcast platform you are listening to. Kim and Ryan, thanks so much for taking the time to do this and for pitching this series. This was a really, really powerful and important series of conversations, and I’m really grateful to both of you for taking the time. [theme music returns]
KNACKSTEDT: Thanks for having us.
PRIOR: Thank you. I enjoyed it.
VALLAS: And that does it for this week’s show. Off-Kilter is powered by The Century Foundation and produced by We Act Radio, with a special shoutout to executive producer Troy Miller and his merry band of farm animals, and the indefatigable Abby Grimshaw. Transcripts, which help us make the show accessible, are courtesy of Cheryl Green and her fabulous feline coworker. Find us every week on Apple Podcasts, Spotify, or wherever you get your pods. And if you like what we do here at Off-Kilter Enterprises, send us some love by hitting that subscribe button and rating and reviewing the show on Apple Podcasts to help other folks find the pod. Thanks again for listening and see you next week.