‘After #COVID19’ is Just for Some, and ‘Normal’ Never Was: We Need Equity. ⁠

On the new report "Chronic Injustice: Centering Equitable Health Care and Policies for COVID-19 and Other Chronic Conditions," and my comments from the online press conference launching it.

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Last week I spoke at the online press conference releasing a new report for which I served as principal author: "Chronic Injustice: Centering Equitable Health Care and Policies for COVID-19 and Other Chronic Conditions."⁠

As noted in the Executive Summary:

No infectious disease epidemic in history has ever been so clearly fueled by chronic disease as COVID-19.

And yet, over a year from the COVID-19 pandemic’s onset, city, state, and federal leadership have no clear plan or processes in place to properly implement the many well-proven, community-led, and evidence-based practices to significantly prevent and control chronic diseases that have been exacerbated or caused by COVID-19.

Further, 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.

There is now abundant evidence that like other viruses such as poliovirus, SARS-associated coronavirus, and Epstein-Barr, SARS-CoV-2 can trigger chronic disease, often called Long COVID by people experiencing it and now referred to as post-acute COVID-19 syndrome (PACS) or post-acute sequelae of SARS-CoV-2 (PASC) by the National Institutes of Health (NIH).

At the same time, COVID-19 infections and the massive societal disruptions brought about by the pandemic have worsened conditions and outcomes for people with pre-existing chronic conditions.

New York will emerge from the pandemic with our residents facing an even more significant, potentially lifelong, and racially disproportionate burden of disease; physical, mental, and emotional health challenges; and a potential deluge of non-medical suffering associated with chronic conditions that have been created or worsened by COVID-19, including stigma, isolation, and economic devastation.

To honor those we have lost and those who remain in harm’s way, we must not accept an “end” to this crisis that consists solely of mass vaccination, a return to prior rates of in-person schooling, and the reopening of non-essential workplaces.

And here’s what I said at the press conference:

Every day, I live with the three most common symptoms experienced by people with Long COVID: fatigue, post-exertional malaise (known as PEM), cognitive dysfunction, and others.

Ironically, it means I am actually feeling slightly better over the past month as I’ve been recovering from a broken ankle, because it has forced me to stay in bed around 95% of the time, lying down and looking at a tree out the window while paying out-of-pocket for home help i’m privileged to have resources for. #FairPay4HomeCare

Earlier this month, in the pre-surgery test for my ankle,  I came up as positive for asymptomatic COVID by PCR. 

That’s in contrast to a year ago this day, the first one where I was without fever in a 10 day span from presumptive COVID without testing -- I followed the instructions of public health officials in New York and beyond, assumed I had COVID and isolated at home.

Since that March 2020 illness, I’ve had difficulty finding words… I wear a thick blanket of fatigue that bridges emotional, mental and physical dimensions. At times, I tire much more easily.

Now that I’ve tested positive for my second though asymptomatic bout of COVID, I would perhaps be eligible to join a long waiting list to go to one of the few, multi-disciplinary post-COVID clinics -- as they won’t accept anyone who doesn’t have a history of a positive COVID test.

But then again, I actually probably can’t. Because here’s the thing: these symptoms - while vexing and at times debilitating -- only intensified after I had COVID in March of last year. 

Fortunately I am able to get some some care for my chronic conditions. Because (unlike many with this constellation of symptoms) I have garnered hard-to-get diagnoses for them , including myalgic encephalomyelitis -- known as ME/CFS and often mislabeled as chronic fatigue syndrome -- in large part because I am white, have been an HIV-focused research advocate, and have private health insurance.

I’ve lived with all of it for well over a decade, at the level which clinicians may call mild -- in that way that many people describe “mild” COVID as being the most sick by far that they’ve ever been in their whole life. But indeed mild, as i recognize that 75% of people with ME/CFS can’t work and 25% are homebound or bedbound.

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Almost every chronic diagnosis I have -- except for my seasonal allergies, perhaps -- is known as complex. 

Complex, like Long COVID, and like Long COVID, sometimes called mysterious, though really, there is nothing mysterious about the reality that people are experiencing a post-viral, complex illness that for many has or may become chronic. This was predicted by disabled people and people with chronic illnesses who were talked about but not to as the pandemic approached and began to spiral out of control.

Long COVID is not a new or mysterious phenomenon. COVID-19 is a new virus but chronic illness, including ME/CFS, following viral outbreaks is not new,  including SARS Coronovirus, Ebola, H1N1, Ross River, West Nile Virus… even Polio, where it may take decades to emerge.

Also complex, but not mysterious, is:

  • The immoral gaslighting of patients who are told it’s all in our heads -- especially as many of us are women, queer and/or people of color, 

Complex, but not mysterious, is:

  • The absence of care for the vast majority of people who are experiencing life-changing complex illness -- I’d say especially if they are uninsured, not white and not in urban areas, but truly the scope of conditions like ME/CFS and long covid means that even privileged people like me can often not get the right diagnoses or specialized care EVEN if we are white, even if we are insured, and, yes, even if we’re straight white cisgender men.

There’s all of about 20 ME/CFS specialists - many approaching retirement age - in the United States, and as you can imagine, they are now besieged with calls from desperate Long COVID patients.

Complex, but not mysterious, is:

 people with complex syndromes, including those with viral triggers, often have more than one condition with shared symptoms like fatigue, chronic pain and neurological dysfunction. But our care, if we are privileged enough to have access to it, is spread across medical disciplines and a range of busy specialists, many of whom do not actually treat the fatigue, PEM or cognitive/neurological dysfunction.

And complex, but not mysterious, is the oversimplified and false binary storybook I’m asking you to repudiate -- as members of the press and as the friends and family with disabled people or people with chronic illnesses, or as people living with chronic conditions yourselves:

-- that’s the false-dichotomy, the by-our-bootstraps oversimplification that writes off millions of humans as damaged goods and dependent burdens, saying we are either (but never both) healthy or sick, that we are either unwavering triumphant fighters who overcome disease or unhealthy losers who did something wrong to get or stay ill…  or that we are either capable and promising, or we are broken lesser-thans who should expect to suffer, to lack autonomy and agency, or to die - particularly if we aren’t white.

Now is not the time to go back to what we used to misname as “normal.” Now is the time for health equity, which will only come from economic justice, racial justice, and disability justice.

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Even before COVID-19, six of every ten people in the United States had at least one chronic condition. If anything is “normal,” it is the very human realities of illness and disability across the lifespan; it is the disabling structures of society that isolate and disregard those among us who are living with them. 

In our report, we say that we must recognize COVID-19 as a chronic condition or trigger of chronic conditions for New Yorkers and accept that vaccination alone will not address or undo the damage of COVID-19. 

We demand an equitable, community-led, comprehensive and long-term response centered on addressing the chronic health conditions that created vulnerability to the pandemic, or that were triggered or worsened by COVID itself—establishing, funding, and evaluating a new model of care that ensures quality, accessible care for all who have these conditions. 

We have comprehensive cancer centers. We need comprehensive centers of care for complex chronic illness. 

ME/CFS and other complex chronic conditions are underfunded, and understudied.

People with ME/CFS are under-diagnosed and underserved. 

But make no mistake -- ME/CFS is not rare - an estimated 1.5 million people in the United States have it. And millions more may join our ranks as a consequence of Long COVID - many who go more than 6 months with these common symptoms are thus eligible for an ME/CFS diagnosis.

Thus we urgently need to develop and scale up SYSTEMS using an equity-based framework and the wisdom of affected communities, including but not limited to Black and Brown people, disabled people and people living with Long COVID, HIV, ME/CFS, diabetes, and mental health conditions 

Thus, Long COVID studies and services must not be restricted by COVID test status or access, which serves only as a marker of privilege or luck, not likelihood of Long COVID itself. In fact, in some studies, ⅓ of people with long covid were fully asymptomatic in the usual period of COVID symptoms.

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There is nothing mysterious about the many, many people with Long COVID - immigrants, Black and Brown people, home health care workers, sex workers, imprisoned people, disabled people, and others -- who are currently locked out of any access to care. It is the same implicit and explicit bias that has created such inequitable disparities in COVID rates, COVID severity and COVID deaths, as well as inequities in diagnosis and care for ME/CFS and other conditions. 

In December, Congress provided $1.15 billion in funding over four years for NIH for research on long-term effects of COVID. This funding must be used wisely, and both benefit from what we know about ME/CFS while explicitly including ME/CFS patients and others in baseline-setting and differentiating research to jump start our knowledge.

Conditions like ME/CFS, fibromyalgia, and others may not have a lab test that gives a yes or no answer, but they do have definitive diagnoses. Long COVID will too, and it needs to be set accurately by inclusion of all affected communities in the research to learn what it is, and what can be done. 

NIH has long neglected to invest in researching ME/CFS. It continues to remain the most underfunded disease in the NIH’s portfolio based on disease burden. It is imperative that the NIH fund ME/CFS research as part of its Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) initiatives.

To the leaders of my city and state, I remind you: Each New Yorker has but one life and it is unique, sacred and valuable. Now is not the time to return to a normal that writes off so many of us. May the suffering we have borne witness to, and that some of us have had the privilege, grace or luck to survive, bring the mandate for true, comprehensive and collaborative social, racial and health equity for us all. Thank you.

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