In a Rose Garden speech in July of last year, President Joe Biden declared Long COVID a disability under the Americans with Disabilities Act (ADA) and launched a set of policies designed to help COVID long haulers needing accommodations for school or work, as well as for the many who cannot work at all.

Away from the applause, however, Biden’s declaration was a good start, but still a long ways off from actually delivering the help that long haulers need to get their lives back. A year later, there is much more that the Biden administration must do to help the millions of Americans left with often debilitating effects of COVID-19. Long COVID remains a stubborn, vicious condition, as long haulers can attest.

As the ADA turns thirty-two years old this summer, prioritizing efforts to address the long-term effects of COVID must be a centerpiece of the next generation of disability policy. In marking the anniversary, we must note that Long COVID could represent the largest mass disabling event of our lifetimes, casting a shadow over the destinies of a generation, just as previous epidemics of polio and HIV have done in the past century.

President Biden will soon receive the findings from the Department of Health and Human Services’ (HHS) interagency national research action plan for Long COVID. We welcome this robust whole-of-government plan outlining how agencies will prevent, diagnose, treat, and provide services for millions of Americans in need.

Getting these policies right is a once-in-a-generation opportunity, and not just for COVID long haulers. If the Biden administration succeeds in creating a coherent vision for Long COVID, it could remake policy in a way that delivers new dignity for disabled people for decades to come.

What follows is an edited question and answer session from the Off-Kilter Podcast, hosted by The Century Foundation’s Rebecca Vallas. The podcast aired on July 8, 2022. For the first part in this Off-Kilter podcast series, Rebecca Vallas spoke with patient advocates about their personal experiences with Long COVID.

For part two, Rebecca spoke with Ryan Prior, who is a chronic illness advocate, CNN journalist, and author of the forthcoming book The Long Haul. Also participating in the conversation was Kim Knackstedt, co-director of the Disability Economic Justice Collaborative and former director of disability policy for the White House Domestic Policy Council. This second conversation focuses on what policymakers can do to help COVID long haulers. To hear more from the participants, listen to the full podcast episode here.

Q: How big of a problem is Long COVID?

PRIOR: 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 viral infection—or a bacterial infection; so, we just say infection-associated chronic diseases—that if there was going to be a wave of 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 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.

We knew 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 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 and awareness. 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 United States has some form of Long COVID. So, this is a major problem.

This crisis 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 Rehabilitation is one that is leading and coordinating Long COVID clinics around the country. The National Health Service in the United Kingdom has a network of Long COVID clinics. But just because a Long COVID clinic exists, that doesn’t mean 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. 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.

Q: COVID-19 has spurred a mass disabling event, the largest influx of new entrants to the disability community 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. Is it unusual that a new disease might take awhile to be fully recognized?

PRIOR: The idea of a contested disease—not yet fully defined or not yet fully mainstreamed—has played out numerous times over the last couple centuries. Diseases that we think of as mainstream now were first discovered or defined at specific points in time. There were times 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. HIV is a prime recent example. In some quarters, it was not seen as a major issue when it first emerged in the 1980s. Lyme disease is another example of one that’s where the patients have been in a knock-down drag-out fight with some public health authorities about how to define it, and how and why they need treatments.

These battles 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. If you go much further back in medical history, in the 1850s, there’s something called drapetomania: It’s a “running away slave disease,” a mental disorder that slaves had that was simply a desire for freedom. But that gets miscategorized as a mental disorder because of who had power and who didn’t have power. This foregrounds this controversy over Long COVID where you also see socio-political power structures at play.

Q: How does a disability frame accelerate the process for recognizing Long COVID?

KNACKSTEDT: It was really March and April of 2021, early in the Biden administration, where we were having interagency conversations about the COVID response. In particular, these were folks across different agencies specifically engaging around disability policy. The question was, “how are we going to respond to COVID for disabled Americans?” Long COVID continued to come up and then, what were we going to do to respond?

After hearing from advocates and listening to the voices of people most impacted, including providers, everyone realized there needed to be an intentional response to say that Long COVID can be a disability. If it’s just a health response, we lose the big-tent approach to disability. We lose a fundamental perspective of rights: health rights, employment rights, and educational rights that come with actually being very clear that somebody who has Long COVID—which can be a very significant chronic illness—actually is part of the disability community.

That decision was made in the spring of 2021 and there was a rapid response across agencies to accomplish it. It was really a collaborative effort. The Biden administration announced—on the anniversary of the ADA—that first, there’s a fundamental civil rights piece from DOJ and HHS that Long COVID can be a disability. But Long COVID as a disability could also be viewed from a perspective as an educational right, impacting children, as was seen from the Department of Education guidance released. The Administration for Community Living came out with resources: it was sort of a welcome to the disability community packet. Then we saw the Department of Labor Office of Disability Employment Policy provide resources for those who needed accommodations on the job.

The federal government’s first real action was to say that Long COVID can be a disability. That set their trajectory of a lens of disability across all these policy areas and policy actions. That has led to the point of President Biden issuing a presidential memorandum for a whole-of-government response. It’s a collective effort of actually working with advocates in an intentional way to make some initial progress.

Q: How has the pandemic afforded new opportunities to leverage the collective power of the federal government and galvanized agencies to work together? How has this big tent approach of disability impacted the broader community and chronic illness community?

KNACKSTEDT: There are more people than the public recognizes in the federal government who have disabilities, have siblings with disabilities, or a family member impacted. So many people feel very passionate about these issues. Maybe they have chronic illness. Maybe they were impacted by disability at a point in their lives. Disability is not a linear path for everyone. President Biden speaking in the Rose Garden in front of the press and members of Congress about disability and Long COVID was important and demanded that everyone pay attention. It was a really significant and historical moment.

However, we can’t make good disability policies if we don’t have really good research and data, across all federal programs. We also must have a good understanding of practice and what’s actually happening on the ground. Policy, practice, and research. Those three pieces can kind of be considered in a “triangle” with these bi-directional arrows all impacting each other. That’s how our Long COVID trajectory works too. 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, we’re not moving in the right direction.

VALLAS: As we’re talking about the nexus of research and policy and practice, that’s the anchoring theory of change of the Disability Economic Justice Collaborative. It’s a different way of trying to make 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 a novel, revolutionary concept to have people with disabilities be considered when we make economic policy.

Instead of having disability be an afterthought or in its own little silo that is never integrated into overall policymaking for this country, the Disability Economic Justice Collaborative 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 such as the Patient Led Research Collaborative and the COVID-19 Longhauler Advocacy Project, and ME Action.

PRIOR: One part of the story is framing this as a disability and getting agencies to spring to action. That’s a very positive, validating story for a lot of people who have not returned to health.

However, there’s still a lot to be done with the NIH researching the underlying biological cause of the illness, and developing clinical trials. There was an initial $1.15 billion allocation by Congress as part of the stimulus bill in early 2021. Advocates were elated about the size of that research program.

Organizing large-scale scientific initiatives is difficult. To NIH’s credit, it put together what it calls the RECOVER Initiative (short for “Research in COVID to Enhance Recovery”) in record time, accomplishing in a number of months what might’ve taken a number of years to do otherwise. However, it feels quite slow by the standards of long-haulers who were disabled, sick and not able to return to school or return to jobs or able to care for their families. Many of them are hungry to be part of clinical trials, and desperately want treatments immediately. 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. We’re already two years into the pandemic. Many long-haulers have been sick that whole time. They feel that the RECOVER Initiative is just spending time studying 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 that was obvious twenty months ago. Plus, 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.

Another part of patients’ frustration with the RECOVER Initiative comes from the underlying assumption in the word “recover.” The idea that the natural state of the body is that it would recover from illness is problematic. One of the questions researchers are delving into is how long it takes people to recover. But another question could be, “Why are they disabled?” Many of us in the post-viral community would be more interested in learning that answer, because many in the disability community fear that recovery doesn’t just naturally happen.

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. 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 ten- or twenty-year cycle with enough funding. This may get solved, but in the one- or two-year framework, people have to advocate for themselves.

Q: How has Capitol Hill engaged? Are there bills introduced addressing the issues you’ve raised?

KNACKSTEDT: There are three core bills that’ve been introduced. One bill, proposed by Senator Tim Kaine that’s called the Comprehensive Access to Resources and Education for Long COVID Act, or the “CARE for Long COVID Act.” Rep. Ayanna Pressley has a bill on targeting resources for equitable access to treatment for Long COVID or the TREAT Long COVID Act. And, Representative Beyer has the COVID Long Haulers Act as well. These three bills each focus on different aspects of the three pillars that’ve been identified by the administration as areas of need, which include the following:

  • Pillar one: making services and supports available,
  • Pillar two: advancing the nation’s understanding of Long COVID,
  • Pillar three: delivering high quality care for individuals experiencing Long COVID.

Senator Kaine’s bill focuses on education and dissemination of resources, Representative Pressley’s bill works to increase access to services, and Representative Beyer’s bill focuses on the same two pillars as Senator Kaine’s bill. Since we don’t actually have a COVID package at the moment moving through Congress for any funding, we unfortunately don’t see those bills advancing right now. We do need resources. Zeroing in on some of that provider education and making services and supports available are really some of the key pieces.

PRIOR: Senator Kaine’s bill has language talking about PASC—which is post-acute sequelae of COVID, or the bureaucratic term for Long COVID—PASC and related conditions. It calls out several known post-viral conditions that have been neglected, ME/CFS and POTS included. I find that language welcome in that bill.

The Long Haulers Act proposed by Representative Beyer has a lot of important provisions about data harmonization, an important concept because in a fragmented health care system such as our own. It can be easier to do certain large-scale research in particular European countries where there’s a single payer system. We have a fractured data infrastructure because of the various systems in place in the U.S. Some of those data harmonization elements will be key in helping us define the Long COVID problem.

Q: How does Long COVID play into the larger historical struggle around the unfinished business of the ADA?

KNACKSTEDT: Long COVID has really caused the disability community to confront the importance of including the chronic illness community in an important way. 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. Maybe in the last five to ten years there’s been a little bit more of an all-is-welcome and a breaking down of those silos and barriers. Now as we see long-haulers having to go through the struggles that many of us have gone through, it’s really taking a big tent approach to disability in an intentional and thoughtful way.

Looking at the unfinished business of the ADA, we often get to July, and it’s time to look at the four outcomes and say, “Ah! We haven’t made it.” And then we move on to August, and it’s forgotten. This is a time for us to think about that economic security goal. When we reflect on why we have so many people that are having to rethink work and their health care, how, as an entire community, we think about really advocating together and fighting together for long-term policy change and long-term narrative change that actually allows us to achieve economic security together. It’s a reckoning for everyone and allows us to really commit to what economic security actually means.

Q: How might Long COVID inspire new reforms to the disability system and what can policy makers consider?

PRIOR: One great place to start is a specific policy idea that I have written about for The Century Foundation. I’ll credit the Patient Led Research Collaborative for pointing this out that we need to elevate the idea of a federal short-term disability benefit. 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. 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 cut themselves at the knees by curtailing their recovery process. So, there’s a lot of benefit for the short-term disability policy at the federal level.

VALLAS: The leading recommendation from healthcare providers is to rest. You need to rest when you have COVID! But then people aren’t able to do it because economically, it isn’t actually on the table as an option. This is very parallel to the paid leave conversation in this country—for birth of a child and many other circumstances—where what would be right for your health is in conflict with your economic reality.

PRIOR: People with Long COVID frequently experience post-exertional malaise. They have a relapse of symptoms after minimal exertion. 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. It requires moderate activity at most. Exercising your way out of it is foolish, and that leads to some long-term consequences.

VALLAS: We have an all-or-nothing disability system in this country. If you are not going to be helped by Social Security Disability Insurance or SSI—which is the vast majority of people with disabilities, because of how strict that disability standard is—you’re out of luck. There really isn’t anything else for you. This is a conversation that a very small number of people have been trying to start for a number of years. Now is 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 through the cracks” is a laughably inappropriate and out-of-scale metaphor.

KNACKSTEDT: What is probably most needed is a navigators program for long-haulers. This is not just for Social Security benefits, but for all federal benefits that somebody might now be eligible for to help navigate. It’s an incredibly overwhelming moment to all of a sudden realize that your entire life may have changed by this chronic illness and recognizing what you might now be eligible for all of these different programs with different qualifications, different forms, or different processes. Having someone actually help move you through that process and support you through doesn’t really exist right now. Creating a one-stop shop web page really puts the burden on the individual to go and navigate. Actually having a program that does a bit of the outreach and helps folks would help people in the moment when they’re in the midst of crises.

Another piece would be educating primary care doctors and making sure specialists understand. Having a doctor that listens to you and believes you can be the most impactful thing as you’re going through this.

PRIOR: A few additional recommendations: a provider network and Centers of Excellence. 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 types of centers for other diseases, including multiple sclerosis, you get a lot done. These are major hubs of care and innovation and would be key for solving post-viral illness.

I love the idea of doing a resource page, which could really help make people feel validated but also help direct traffic and get them to the services they need. But, in the end, it really comes back to listening to patients. Sir William Osler is the father of medical education in the nineteenth century. He says, “Listen to the patient, and he will tell you what the disease is.” 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. I’m excited that many agencies are seeing that. That itself would be revolutionary when it comes to, unfortunately, how a lot of folks get treated and get disbelieved or gaslit.

Q: What else can the Biden administration do to help long haulers?

KNACKSTEDT: There’s the big question of what happens next. I 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. They should use every lever they have possible to educate this country, the public, doctors, nurses, everyone that is engaged with individuals who have Long COVID to actually listen to patients and accept that Long COVID is here to stay. It’s not going away, and it is part of our lives.

There’s also a piece that the pandemic isn’t over. That needs to be part of our awareness and our ongoing conversation.

A year from now, I hope that we have more research, can make better informed decisions, and 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. I hope we also have a better understanding of benefits, and we can direct folks to where they need to go. That is the vision. I really think that the administration needs to use their full power to do whatever they can and not let this moment go.

VALLAS: 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. Long COVID is impacting communities across this country and people of all political stripes and ideologies and perspectives. 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 going to 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. It is a reminder that voting is really important, given that there’s a lot at stake in terms of the policy response.