Still On the Margins: Long COVID Patients of Color

Still On the Margins: Long COVID Patients of Color

 

Angela Meriquez Vázquez, MSW

Before getting COVID-19 here in Los Angeles in March 2020, I was a runner for nearly two decades. In fact, the morning of the day I first started feeling sick, I had gone for a great three mile run.  It’s been over three years of Long COVID symptoms and I now embrace my new identity as a disabled person of color. Still, it has been a journey of reflecting on my own privilege, and understanding the new (to me) ways in which I and people like me, continue to be marginalized — not just in healthcare or employment, but also in our own justice movements.

With Long COVID, I now have several ongoing chronic illnesses, including myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome or more simply, ME/CFS.  It is a neuroimmune condition whose hallmark symptom is post-exertional symptom exacerbation, which means when I push myself past a dynamic, often unpredictable threshold, I will experience a relapse of my worst symptoms like insomnia, trouble concentrating and confusion, sleep apnea, heart palpitations, fevers, and severe migraines. I have developed a strict pacing regimen that allows me to work from home more than full-time, but not do much else, even three and a half years after getting sick.  Even as a disabled person of color, I have a tremendous amount of privilege due to my professional employment, skills as a policy advocate and organizer, and citizenship status in this country — all of which have served as essential buffers against some of the worst outcomes of our country’s white supremacist ableism.

Unlike me, at least half to nearly two thirds of surveyed Long COVID patients could not work full-time, according to peer-reviewed research conducted by the Patient Led Research Collaborative, a group of patients with Long COVID that started their peer-reviewed research through the now sunset Body Politic support group.  Many patients like me experience unremitting fatigue along with neurological and cognitive symptoms that make it difficult to drive, make decisions, remember instructions, follow conversations, and plan ahead.  The Brookings Institute recently estimated that 1.6 million workers are out of the workforce due to Long COVID, which represents an astounding majority of the estimated 2.2 million people that the labor force is missing from its pre-pandemic size. National data from the Centers for Disease Control and Prevention’s (CDC) Household Pulse Survey indicates that Latinx and LGBTQ people are experiencing Long COVID at disproportionate rates. This is no surprise, particularly for communities of color, as we have overwhelming evidence that marginalized communities who contend with systemic barriers to social drivers of health like adequate housing and income, and safe workplaces were disproportionately impacted by COVID-19 hospitalizations and deaths. This is only compounded for people who are undocumented, many who are frontline workers who had no choice but to risk exposure to survive, and yet even in a global health emergency, were systematically excluded from healthcare and public resources, leading to ongoing and compounding poor health outcomes in immigrant communities.

I am on the mild end of the spectrum of disability of Long COVID patients and have had access to a lot of concrete support from others with ME/CFS. In the early days, these “illders” guided me to the right specialists, and armed  me with research on infection-triggered conditions like POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), ME/CFS, and potential treatments to try. Crowd-sourcing this type of historical grassroots wisdom was part of the magic that was born out of the digital organizing that Long COVID and other social justice activists led in online spaces. This organizing happened in parallel and seemed to generate momentum from the in-person organizing and protests led by Black activists that sprung up in the summer of 2020 after the police murdered George Floyd, an unarmed Black man. My own lifeline, and the lifeline of nearly 15,000 patients from across the globe, was the Body Politic support group, founded by Fiona Lowenstein, who kicked off the movement for Long COVID justice with their op-ed in the New York Times that identified what would become the devastatingly common experience of prolonged, debilitating, largely untreated symptoms after getting sick with COVID-19. Taking our cues from historical movements for disabled and sick communities such as those with HIV/AIDS, individual patient support grew beyond the sum of its parts to transform into acts of radical activism and civil disobedience, policy advocacy, with leaders in our movement testifying in front of Congress, driving clinical research publicly funded by the National Institutes of Health, and inspiring federal legislation.

Digital organizing became an essential community-care tactic as the in-person world persisted in its hostility toward those who are high-risk to poor outcomes from a COVID-19 infection (whether they are aware they are high-risk or not). Still, despite the prominent grassroots activism online, those who are most vulnerable to the disparities we see in all health conditions, including Black, Indigenous and people of color, and others from marginalized, low-income communities, are not meaningfully engaged in the movement for Long COVID and disability justice. These groups are not absent from the movement, but are relegated to the margins in advocacy because of the digital divide and inequitable access to resources and healthcare created by oppressive social conditions. We know that COVID-19 has disproportionately impacted communities of color both economically and in terms of their health. This means that there are likely millions of Long COVID patients who — because of income, immigration status, digital inequities, and discrimination in healthcare — remain unidentified, unsupported, or otherwise marginalized with their new disabilities by the healthcare system, employers, schools, and the broader organized grassroots movement for Long COVID and disability justice.

Despite there being a large number of exceptionally knowledgeable and skilled leaders of color in the Long COVID and chronic illness community, the most visible leaders, researchers, and spokespeople for Long COVID patients are white. These leaders typically held identity-based privilege before they became disabled from Long COVID. Many have the financial means to invest their time and labor into building grassroots efforts without a steady income. Others have family networks with resources on which to fall back. Still more had education and professional credentials that allowed them to translate their skills into contract-based work that kept them afloat. They are also seen as more “articulate” and effective at communicating which is rooted in racism. Thus, the image of someone with Long COVID in the media and public overall is overwhelmingly white and middle class.

In the Long COVID movement, organizers of color like myself have worked to center practical and immediate actions that governments, including federal and local, could take to improve clinical care and community health resources. This advocacy is complementary to but much less attractive than the highly publicized clinical research efforts devoted to successfully treating and ultimately curing Long COVID and related chronic illnesses like ME/CFS. Not everyone has the privilege to work on long-term goals when there are significant unmet material and care needs The work of organizers of color is in response to persistent government inaction and indifference to making concrete investments in building the capacity of communities to address the social drivers of health that are exacerbating the mass disabling event that is Long COVID. For example, as President of Body Politic, I worked to identify opportunities to call for the Biden Administration to use its regulatory authority to issue guidance to state Medicaid agencies on Long COVID, develop strategies for identifying and tracking Long COVID cases, and require clinical education for Medicaid-funded providers in infection-associated chronic conditions. This felt like the bare minimum necessary to ensure that information and support (however insufficient) reached Long COVID patients of color who were not connected to the existing Long COVID digital efforts, including patient support groups. Unfortunately, despite attempts to fundraise, we had to shut down the Body Politic support group and transfer related advocacy efforts to a partner organization, #MEAction. I was still working full-time in order to sustain my income and employer-funded health insurance; without significant resources to pay full-time staff to lead and manage our excellent team of (sick, disabled) volunteers, Body Politic’s efforts could not be sustained.

White supremacy, capitalism, privilege attracts and consolidates power. Unfortunately, the nonprofit-industrial complex, largely resourced by privately-funded philanthropy, overwhelmingly funds professionally-delivered clinical or social services and is typically averse to systems-change, policy advocacy, and community organizing. It is also historically indifferent or hostile to organizations and movements led by BIPOC and queer people. Cryptocurrency leaders have, to some extent, stepped into the Long COVID space to fill the gap that traditional philanthropy has left in our movement.  However, despite the public perception of being disruptive, the majority of philanthropy dollars, including cryptocurrency, invested in Long COVID have gone to white-led organizations to drive clinical and academic research efforts (notwithstanding important exceptions such as, Long COVID Justice, founded and led by queer and trans health justice activists). Combined with the only federal investment in Long COVID in the form of the RECOVER initiative, a $1 billion effort to define clinical treatments for Long COVID, the totality of Long COVID resources has served to, on the whole, reinforce inequities in healthcare and clinical research, rather than disrupt or transform public health and social service systems to be more responsive to the needs of marginalized people, including disabled people of color.

As I write this, there is an ongoing healthcare access emergency for people with low socioeconomic status, including those disabled by Long COVID and unable to work, or unable to work at their previous capacities. That emergency is the return of Medicaid eligibility redetermination as a result of the federal Public Health Emergency unwinding. During the height of the pandemic, low-income people on Medicaid did not have to periodically prove they were still eligible (i.e., still poor enough) to qualify for their state’s Medicaid program. Having to prove that you and your household are still eligible for Medicaid’s public health insurance program is a time-consuming, stressful, and bureaucratic process that contributes to millions of otherwise eligible households losing their health insurance because of application errors or missed notifications.  

Hundreds of thousands of Long COVID patients are likely to be new Medicaid recipients who have not previously had to go through the redetermination process and do not know to be on the lookout for their redetermination materials. They may have moved due to their shifting financial situation and employment opportunities and thus may have missed notices sent by mail. Or, they may be simply too ill to understand and complete the redetermination process on their own. If they lose their health insurance, they will inevitably become sicker and almost certainly become poorer. Nearly three-quarters of Medicaid disenrollment in the last several months are the result of administrative or procedural issues, not because these Medicaid recipients have miraculously increased their income overnight. Despite this healthcare access crisis, I have not seen our movement leaders publicly calling for the halting of the redetermination process with the urgency it demands.  Even the federal agency overseeing Medicaid, the Centers for Medicare and Medicaid Services (CMS), called for states experiencing large numbers of disenrollment to pause their redetermination process, along with ultimately reinstating coverage for 500,000 Medicaid recipients, including children (who are also impacted by Long COVID).

My comrades in Long COVID justice work do indeed work to make space for the voices of advocates of color in their respective efforts. Still, as an advocate of color, I feel I am participating in political theater rather than driving systemic change across all the systems that impact marginalized communities. My colleagues have also made tremendous efforts toward putting patients at the center of and in the driver’s seat of clinical care and research for Long COVID and other infection-associated chronic conditions. However, absent organizing and action around social drivers of health like housing, food assistance, and insurance coverage, our movement will  continue to struggle to connect with and meet the needs of marginalized communities. It is not too late for Long COVID leaders and funders to interrogate the implicit and explicit rationale for which patients we center, where, why and how we center them, and conspire together to build power and political will with patients who are still on the margins of our movement toward Long COVID justice.

 

ABOUT

Angela M. Vázquez has spent nearly a decade in public policy, coalition-building, and activism on behalf of children and families. Her work has been centered on ensuring the well-being of marginalized youth from birth through young adulthood, especially as their life opportunities are impacted by their race/ethnicity, trauma, and poverty. Currently, Angela is a Policy Director at The Children’s Partnership, covering a portfolio that includes mental health and child well-being. In 2020, she was appointed to California’s Citizens Redistricting Commission, an independent body tasked with redrawing California’s elections boundaries that made historic efforts to preserve communities of interest and established a “gold standard in citizen-led redistricting.” In 2020, Angela became ill with COVID-19 and has since developed Long COVID – a condition marked by prolonged, disabling symptoms experienced by up to 1/3 of COVID-19 patients. Through several grassroots organizing efforts, including as President of Body Politic, a health justice organization and home to one of the first global Long COVID support groups, Angela is leveraging her skills in leading intersectional children’s well-being advocacy to advocate with and on behalf of other disabled people of color.

 

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