Vaccination alone will not address or undo the damage of COVID-19. That’s a resounding message from a report released in March by the COVID-19 Working Group of New York, a coalition of doctors, health care professionals, scientists, community workers, activists, and epidemiologists formed last year to respond to the pandemic’s disproportionate impact on vulnerable and marginalized communities in New York City.
The report, which was created by the group’s Health Care Access subcommittee, makes a clear call for society to put a plan or process in place to prevent or control chronic diseases that have been exacerbated or caused by COVID-19. It goes on to add that “there is inadequate discussion and planning for the massive influx of chronically ill patients into strained and fractured systems of care already rife with inequities.”
Titled, “Chronic Injustice: Centering Equitable Health Care and Policies for COVID-19 and Other Chronic Conditions,” the report includes lessons from the HIV epidemic and more than a dozen recommendations towards “transparent and comprehensive efforts for genuine equity.”
In a discussion about the report, Terri Wilder recently spoke with COVID-19 Working Group of New York members JD Davids—a queer, transgender organizer, writer, and strategist living with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and several other chronic conditions and lead author of the report—and Kimberleigh Smith, M.P.A.—the senior director for Community Health Planning and Policy at Callen-Lorde Community Health Center and one of the report’s editors.
How Are People Accessing—or Not Accessing—Health Care?
Terri Wilder: First of all, congratulations on the new report. This 23-page document was released in March 2021 and commissioned and advised by the Health Care Access subcommittee of the COVID-19 Working Group of New York. Can you start by telling me about the COVID-19 Working Group and, in particular, the work of the Health Care Access subcommittee?
Kimberleigh Smith: Thank you, Terri. The COVID-19 Working Group is essentially a coalition of advocates, health care professionals, social workers, and epidemiologists. We came together early in the pandemic—in early March of last year—like everyone, alarmed at what was happening with the COVID-19 pandemic, but committed to trying to formulate a community-driven response to the pandemic.
Many of us come from HIV advocacy and activism. It was our intent to bring the resources of that movement to bear, as well as good public health and science and smart policy thinkers, and to try to focus on what policies and structures and systems need to be put in place or strengthened to address the pandemic. That’s the COVID-19 Working Group.
And out of that, several subcommittees formed. We took on a lot at the beginning, and we still are taking on a lot. We started to try to parcel off some of the work and response. One of those groups was vulnerable populations because it was very clear early on that there were communities that were being disproportionately impacted by COVID. This is not new to many of us, that there are marginalized communities and vulnerable communities that are hit harder when these crises happen.
Then out of that group sprung the Health Care Access subcommittee. We decided to take on just what the group’s name implies, which is to look at how people were accessing health care, or not accessing health care, and what were the barriers and challenges?
At the beginning, we were looking at everything from testing and contact tracing, critical care access, rationing, and the ethics involved in that. We talked a lot about data and health equity response, and getting the data. Then at some point, in the summer, our conversations started naturally shifting to talking more about chronic health care conditions and underlying conditions that folks with COVID-19 were experiencing and how COVID-19 was impacting folks with chronic conditions—but also triggering or exacerbating those conditions.
We decided to do a series of meetings where we took a deeper dive into particular topics, like HIV, mental and behavioral health, and long-term care. And those conversations and discussions about the ways in which COVID-19 triggers and exacerbates and highlights chronic conditions is what sort of prompted this report.
“It’s Society That Disables Us”
Wilder: JD, you served as the principal author of the report. And, of course, there were other folks who contributed to the report, which is very nicely laid out.
Before we really dive into some of the main highlighted topics in the report, I really wanted to ask you about something that you recently said: that there’s this false binary storybook about chronic disease. I’d really like to talk about that. In terms of chronic disease, what binary beliefs exist?
JD Davids: I’ve found a lot of utility in reminding myself that all binaries are probably false. In this case, there’s a binary of sick versus healthy. In our society, there’s a subliminal—or not so subliminal—message that if people get ill, or don’t recover, or get worse, or stay chronically ill in different ways, there’s some sense that we’ve failed.
When we look at binaries, usually it means they’re constructed so there’s a good and there’s a bad side of the binary. There’s the healthy that’s good, and sick that’s bad. If we’re sick, we’re on the downside of the equation. And in these binaries, if we’re on that downside, it’s that we’re in this position where either we have no agency, we have nothing to say about it—which happens sometimes in gender binaries—or we’ve done something wrong or deserve it—which is how it’s construed or biased, when it comes to illness.
So in the case of someone like myself—I’m chronically ill and have been for a very long time—I’m a very healthy person in many ways. I’m, emotionally, very healthy. I have a really fulfilling life as a parent, as a partner, as a community member. And I also deal with chronic illness.
Similarly, for many of us who are disabled people, it’s society that disables us. It’s the lack of funding and attention for accessibility, for access measures, that can isolate people, and that can force people into poverty or institutions.
So, there’s not a binary of able versus disabled. There’s a social construct that punishes people, some people, and rewards other people, and that locks people away, rather than doing all possible efforts to make sure that people can be able to conduct their lives with dignity and function.
Wilder: I’m often very concerned that people—and that includes scientists, medical providers, and even activists—are really not thinking in a comprehensive way about COVID-19. They’re so focused on vaccines that they aren’t really thinking about the people who have been impacted by COVID-19 as a chronic disease, and may have even completely dismissed, ignored, or not paid attention to folks that call themselves COVID-19 long-haulers. Can each of you speak to your thoughts about how priorities should be established in COVID-19 activism, science, and medical care, and why there seems to be this pattern of not addressing this, when people are literally, for lack of a better phrase, suffering in front of our faces?
Davids: In some ways, it resembles the first decade of effective treatment for HIV. There was this extra stigma when people seroconverted and acquired HIV, because it’s as if we can’t have two things happening at the same time.
This period right now, it’s excruciating. Because, at the same time that people are getting vaccines, we have extremely high rates of COVID. I expect there to be bias, stigma, and disdain for people who are becoming ill now. And we know that it’s likely anywhere from 10% to 30% of them will stay ill, or become ill later after asymptomatic infection, through having long COVID. There’s this sort of, “Well, why weren’t you vaccinated? Why weren’t you doing what you needed to do?”
It’s as if the announcement that there were vaccines was itself a vaccine. And that meant it was OK to open things up, for which there’s very little proof. There’s a lot of epidemiological evidence for why we shouldn’t be doing what we’re doing, as far as opening up things in the Northeast and in different parts of the country. Yet, it’s as if it’s somehow fine.
It’s not only subjecting people to a terrible physical and sometimes chronic and sometimes fatal illness. It’s subjecting people to emotional and mental anguish, seeing what’s going on that’s so discordant for what needs to be done to honor all that people have gone through, as far as dealing with illness, doing all that they can to avoid it, and dealing with the bereavement of lost families and the lost health of people of all ages who are now dealing with long COVID.
So, the vaccines are incredibly good, and happened incredibly fast. At the same time, there’s an incredible neglect of science and public health in what’s happening now, as far as continuing to back away from the measures that we’ve needed all along. Also, I’ve seen nothing in the mainstream press—and even among many advocates—saying, “This is wonderful we have vaccines because this will allow us, hopefully soon, to be able to turn our sights even more fully to what we need to do for long COVID, which is going to affect perhaps 20 million people worldwide.”
Smith: Something you talked about early on in your response, JD (and I think Terri alluded to this) is just the stigma. Stigma definitely finds its way into medicine and science. But it also finds its way into activism and advocacy.
There is a stigma with COVID-19. And then that sort of extends to long COVID, for long-haulers. I think that it’s the result of medical people or scientists not listening to patients. That carries over, and then advocates and the activists kind of perpetuate that same cycle at times. It’s unfortunate—and it’s very, very frustrating.
That partially explains why this pattern may exist, where the most learned among us—the medical doctors, the scientists, the activists, the epidemiologists—weren’t paying the kind of attention they should have been to COVID long-haulers, as an example.
I hope that we address this. And I thank you for recognizing that we, in this report, do confront that head on. The very first recommendation is to recognize it’s not specifically about COVID long-haulers, but it’s just about recognizing COVID-19 as a chronic condition, or a trigger of chronic conditions—and that vaccines alone will not address or undo the damage. We take that head on, and I hope that the report will spark that thinking in others.
Our Approach to Mental Health Must Be Intersectional
Wilder: I appreciate that, and it’s very clear that the report really starts out as recognizing that vaccination alone will not address or undo the damage of COVID-19. There are sections on mental health and diabetes, and recommendations around equitable access frameworks. Can we talk about mental health, to start off, and specifically including mental health considerations in all aspects of the COVID-19 response? Why is the recommendation around mental health included, and what was the thinking behind it?
Davids: For one, it overturns another binary, that it’s not physical or mental health. Often anything that affects one will affect the other. It was also a way to connect across different communities and their relation to the COVID-19 pandemic. For example, the tremendous need for mental health support to medical providers who have been overworked and at risk, and many of whom may now also have long COVID. It’s been over a year now.
For example, I saw a report recently that in the National Health Service in [England], since there’s one system, they have documented a tremendous amount of long COVID amongst medical staff, and are devising collective ways to address it, including support for mental health. And here, that’s not happening. We don’t have one system, we have myriad health systems that must be dealing with this. But there’s no overall system of support for providers and all people across the medical care spectrum.
So that’s one thing I’ll say about it.
Smith: Agreeing with all of that. Part of the point of the report was to try to make clear the ways that all of these issues are intersecting, and to highlight an intersectional approach to health care and to public health and equity. Mental health is very much a part of that.
It’s also a way to continue to try to make the invisible more visible. Not all mental health and behavioral health issues are invisible. But certainly, there are people who are living with chronic conditions that are mental health–related, like anxiety and other disorders, depression, that you may or may not see. It’s vitally important that we bring to bear that these are chronic conditions that could, again, be triggered or exacerbated by COVID-19.
The section in the report also points out that we have families, particularly Black and Brown folks and Indigenous people, who are experiencing losses because of the burden of the COVID-19 pandemic on those communities. Those communities are also going to be dealing with isolation and anxiety and depression, but feeling it even more profoundly, perhaps. It’s important that we took this intersectional approach and made sure that mental health was very much a part of that.
Wilder: I appreciate you bringing up the health care providers’ piece of it, but also the impact on Black and Brown communities. I found that a lot of friends were reaching out to me to ask, do I know of any mental health providers who have openings? So many people were dealing with anxiety and depression that all the mental health slots were taken, and they couldn’t even find a mental health provider who was taking new patients. Luckily, we had the opportunity to have some services through telehealth or Zoom. But I still feel like there were a lot of people who needed mental health services that probably never got it.
Davids: And who’s supporting the mental health providers with their mental health? I have friends who are therapists, and there’s been so much on them, as well, on every level. A widespread pandemic like this is touching so many people, and everything we saw, the many things we saw in the HIV epidemic that really hit wide and deep in specific communities are more widespread in this pandemic. So there’s even more communities facing it.
There are people who already weren’t able to get mental health services and support, who certainly aren’t then able to compete in an open marketplace with others for it, when they are unable to stop working to miss a single dollar from a tip for delivery services or whatever, and then to be able to then avail themselves of mental health support. This is what I think gets to one of the key points of our report—unless it is truly, deeply community-based, community-run, and community accountable, it’s not going to happen. In order to do any kind of justice by those whose communities have borne the brunt of loss in this pandemic, we need to absolutely root our efforts in equity, which means rooting our efforts in and by these communities. In some cases, for the first time ever.
Smith: It seems, in some ways, so simple. And yet, here we are again, talking about equity and community-driven responses. I do think that has been the thread that has been woven throughout the Health Care Access subcommittee, and certainly throughout the COVID-19 Working Group, which is to center community in a meaningful way, and to create responses to a pandemic that are community-driven, and that the ideas come from community, and sometimes can be community-led, if appropriate.
That comes up across multiple of our issue briefs. You find it in Sarit Golub’s piece on HIV, the lessons that we can learn from HIV. And it’s definitely in the Chris Norwood section on diabetes. That is definitely a resounding thing—and a lesson—that comes from our conversations in this work. I am optimistic-ish that something will come from these recommendations.
What Can We Learn From Long COVID?
Wilder: I want to talk about a really powerful sentence that was included in the recommendations. There’s a mention of a person named Kat Aaron, about a post-election commenter on the How to Survive the End of the World podcast. They paraphrased a really powerful Twitter posting, noting that what was called the coronavirus, quote-unquote, lockdown consisted of, quote, middle-class people hiding while poor people brought them things.
I’d like to close by having a conversation about the privilege of having housing and access to food, and how all of these structures that some people have access to and that others didn’t ended up creating this situation in which some people lived and some people died. And some people are probably going to have a chronic disease for the rest of their lives.
Davids: I think what we’re facing now may be this almost intentional wave of COVID-19 that’s happening concurrent with the onset of vaccination that may, in some ways, be the most biased, in terms of those kinds of privileges and differences. Because who is not able to get vaccines? Who is sort of forced to be out and about and have less control over where they’re sleeping or if they can afford to have a place to live that’s not overcrowded? Versus those who got vaccinated and were able to do what they needed to do to get in line or get an appointment, many of whom were people like myself, who can stay home.
So all the talk and reports about vaccine equity—a lot of that went out the window when it came to actual vaccine provision, because there was nothing in place. Our nation has no muscle memory for equity because it so often isn’t done, you know? So, in the heat of a pandemic and a brutal presidential transfer, all of these things, all of a sudden, everything’s going to be done the right way to do right by people who are largely Black and Brown and poor? Or distanced or marginalized from the health care system, like people in prisons or sex workers? I don’t think so.
It was sort of reminding me of when John Kerry was running for president. He talked about how he had been a Vietnam War activist and made a famous speech about, “Who will be the last person to die for a mistake?” I think in this case, in this COVID-19 pandemic that’s now COVID-21, who’s going to be the last people to die for this mistake is going to be millions and millions worldwide—especially since there is a lack of access to vaccines worldwide. We’ve seen how that creates such disparities from the HIV pandemic, when it was many, many, many years before antiretrovirals that were effective actually reached people around the world.
Smith: A word that always comes to mind to me when having these conversations is vexing. It’s just like the issues that we are talking about that keep resurfacing: racism, economic inequality, and health disparities are vexing. The past year made that even more apparent, through the recent pandemic.
And then, while we didn’t specifically address this in the report, I don’t think we can remove the context of the national reckoning that was happening on racism. I don’t know if we’re ever going to truly get there. But part of the point of the report is to try to reset a little bit, and get people to focus on COVID as a chronic condition—but also that it’s possible that there are things that we can do to restructure health care and public health and the way people access those things.
They don’t always have to do specifically with health. Sometimes they have to do with food and housing. And there is a more expansive way that we can think about health and wellbeing and equity. We can do these seemingly smaller things, more community-focused things, like peer-led self-care education or taking health care interventions to the communities, instead of expecting them to come to us. That will slowly but surely, if we really commit to them, make things more equitable and start to address some of these drivers that make disease happen in the first place.
Wilder: I’ve often wondered: We’ve all globally gone through this very traumatic experience together. And while it happened, if we don’t learn from it and make changes, then what are we doing? What can we learn from long COVID? What has this taught us about what people have gone through? What has this taught us about when people do have interaction with a health care provider and they’re gaslit? What can we learn from that? You know, what can we learn from all of this? This is an opportunity to learn and really change—and not just talk about it.
Davids: One of the key messages of the report is that people living with chronic conditions have many needs in common. And by separating us out by either a diagnosis or a lack of a diagnosis, we are losing the opportunity to work together to support about half the population in living other lives. So, when we now move forward with the hope that—because of its sheer numbers—the hope that attention will be paid to long COVID, if people do not then use that as an opportunity to address chronic care needs for everybody who faces the same types of conditions, symptoms, or challenges as people with long COVID, then we really are missing an opportunity to learn—not just from this pandemic, but what’s been done right and what’s been done wrong in epidemics and pandemics before.
That’s why we wanted to have those other studies. If I look at, as a person who has many friends and family members who are living with diabetes, and I look at what is available to them and not available to them, looking through the lens of being an HIV activist and being able to follow the money and understand some of the motivations for why drugs and devices get invented and are either easier to use, or don’t become easier to use. Or why people get access—you know, wraparound support, for nutrition, relationships, and mental health because that is so important in their diseases—or can’t get that support, because it’s not provided. We see that we can have something that’s hugely widespread, like diabetes, but gets almost ignored, as far as many basic things that people can do that will make their lives so much better and, in fact, prolong their lives. We already have these tremendous disparities across chronic illnesses of people, so, I’m talking the basics of what they need. If we look at, for example, long COVID, ME, and many other chronic conditions, like fibromyalgia and other autoimmune conditions, almost everybody is suffering with fatigue. Well, we don’t have centers for fatigue that would have the latest thoughts and support, and just plain an acknowledgment of what we’re going through. Instead, I have like 10 different types of specialists I can go to, all of whom have virtually nothing to tell me about fatigue—because it’s hardly been looked at, and because quality-of-life issues aren’t being addressed.
So, if we look at the top three conditions that are being faced by people with long COVID—fatigue, brain fog, and cognitive issues—they are incredibly familiar to many, many people living with chronic conditions. We shouldn’t have to scramble and compete against each other just to get some acknowledgment and attention and any kind of support for these very challenging symptoms that can impact our day-to-day life. We should be able to go together or, better yet, services should come to us, no matter what our condition is, that help us address cognitive challenges and fatigue, and help us function and have home care and support.
Smith: Well said. I think my role in this was really as a convener and a facilitator. We have obviously the brilliant JD Davids, who authored the report, and so many brilliant contributors to it. I just kind of helped edit and bring it all together, and helped make a space to have these really important conversations and strategize about how we’re going to make the changes that you spoke about, Terri. So I hope that comes through in the final product.
Wilder: It definitely does. As I was reading the report, it reminded me of Judy Heumann, who is a very famous disability rights activist, and most recently, her history was highlighted in the documentary Crip Camp, which everyone should watch. She was being interviewed by someone on a talk show and was asked, “What has your life been like with a disability?”
She basically just said, “People are under this false belief that disability just happens to certain people, but there really is the high possibility that you just aren’t disabled yet.” When we look at disability across a person’s life, it’s inevitable that there’s going to be some change in your ability.
I think it’s really important for people, no matter what age they are, and particularly in this time of still focusing on COVID as a global pandemic, that people really take some time to think about that—that you may have ability right now, but it can change very quickly.
Davids: That people are able to emotionally and mentally distance themselves from disability and chronic illness speaks to how we have marginalized people, disabled people and people with chronic illnesses in our society—that it’s seen as some other or something separate from our family members and ourselves. We need to unroll all of that in order for all of us to live better, and to not also marginalize the care work done by home health aides and others, who are taking care of people who simply need some assistance for living lives with dignity.
And so, this is a time we have, with disabled people or other people who use home health care. We’re waiting to find out in the New York budget if there’s going to be a mandated increase in pay rates for home care workers in a time of tremendous shortages, where home care work is even more in demand because people are trying to do all they can to avoid going into nursing homes, given what happened there with COVID. The fact that this isn’t a no-brainer, that it isn’t the peak of must-haves in this budget, at a time when the governor got paid $4 million to write a book about not fixing COVID on the taxpayer’s dime, is just really bad. It’s a real indictment of all of it.
Look, you’re either going to become disabled or chronically ill, unless you just suddenly get killed. So if that’s someone’s goal, I can’t really stop that. But it’s my aspiration to grow old, disabled, and chronically ill. You know? With love and support, and giving support. This should be seen as something that we all aspire to, rather than try to push away, and avoid, and marginalize.
Smith: Amen to that.