Long COVID Is a Mass Disabling Condition—Treat It Like One

The impact of Long Covid is still lingering. -File Photo

By Karen Bonuck, Ph.d 

Manhattan Voice 

July 18, 2023

NEW YORK - I scanned Robbins Auditorium on Rose F. Kennedy (RFK) Center Day. I noted few masks; mine was the only N95.

With the announced lifting of the nation’s public health emergency, Einstein had relaxed its COVID policy the day before the event. Everyone was celebrating 50+ years of developmental disabilities care, advocacy, research, and training at Einstein-Montefiore. I attended as the co-director of our RFK University Center for Excellence in Developmental Disabilities (UCEDD). That day, some of our UCEDD’s adult self-advocates and parents of children with rare diseases shared their experiences of advocating for awareness, research, and treatments. The confluence of work and family needs struck me that day. I realized just how much the speakers’ lessons resonated with me.

For example, my previously healthy 20-something daughter has long COVID. Among her symptoms are severe fatigue, post exertional malaise, and muscle pain. In March 2020 she lost her senses of smell and taste. Though she was never hospitalized, like many first-wave patients she was especially vulnerable to long COVID. She worked through gastrointestinal issues, mild chest pain, and exercise intolerance. 

Following a viral (non-COVID-19) illness in late 2021 her symptoms worsened; her waking heart rate rose to 140. She was diagnosed with postural orthostatic tachycardia syndrome (POTS), a nervous system disorder often triggered by a viral infection. Common in long COVID, it has no cure.

 

Long COVID constitutes a mass-disabling condition. Census Bureau data from June 2023 found that in adults with long COVID, 81 percent had to limit daily activities and 26 percent reported significant limitations. Among all U.S. adults at the time of the survey, an estimated 15.5 million reported having symptoms of long COVID. Of those, an estimated 12.9 million had some limitations, and an estimated 4 million were experiencing significant limitations. Women, transgender individuals, and people with disabilities are disproportionately affected, as are Black and Hispanic adults, according to recent census data. These numbers may be an undercount. 

 

My daughter’s clinical and care-seeking trajectories are complex. But three years later she finds it difficult to walk more than a few blocks, took 12 weeks medical leave from her remote job, and (eventually) qualified as having a disability under the Americans with Disabilities Act (ADA). In November 2022, her fatigue markedly increased after I exposed her to a viral (non-COVID) illness, one month later, she moved back to our family home. With a job and health insurance, my daughter pieces together care from specialists in cardiology, neurology, gastroenterology, immunology, nutrition, otolaryngology, psychiatry, and sleep medicine, which she complements with acupuncture, meditation, and gentle yoga. 

Fortunately, she’s able to apply her master’s degree in public health to help analyze the medical literature. 

 

One bright spot has been Dr. Seth Congdon, co-director of Montefiore-Einstein’s COVID-19 Recovery Clinic. He gave a long COVID webinar for our UCEDD’s grant-funded VaxFactsDDNY project. That led us to seek him out. As a clinician he is thorough, comprehensive, and receptive to my daughter’s ideas, and exhibits humility about both what he knows and what he doesn’t know about long COVID. Not all physicians are of such help in navigating the winding and difficult road of long COVID care.

 

Medical Gaslighting & Diagnostic Odysseys

RFK day parents recounted winding roads to diagnosis, one saw six geneticists in 10 years.  Parents of children with development disabilities routinely say their early concerns are dismissed. Likewise, people with long COVID endure medical gaslighting, in which their care is hindered by lengthy diagnostic odysseys and the dismissal of their concerns. Rather than saying outright “It’s all in your head,” clinicians speak of “illness narratives” that promote catastrophic thinking and perpetuate symptoms that “aren’t adequately explained by traditional medical research paradigms.”

 

Long COVID can be considered a disability under the ADA. But medical gaslighting and limited awareness by some in healthcare pose obstacles. For instance, in January, when my daughter asked for two days of paid time off after a flare-up, her supervisor (a social worker!) asked why. After my daughter replied that she felt she might need to go to the hospital, he interrogated her about how a report that she’d worked on until 3 a.m. that day would get done. She went on medical leave, but the group her employer contracts with for disability and ADA matters initially denied her claim; this is common. The nurse reviewing her case discounted three years of test results, diagnoses, and functional impacts as “insufficient to support the claim.”

 

Where Have All the Dollars Gone?

Budgets speak volumes. For fiscal year 2024, the National Institutes of Health (NIH) requests for long COVID ($80 million) and POTS ($4 million) are dwarfed by the average of $1 billion it plans to spend for other diseases and conditions. And two years after the NIH heralded its “RECOVER” initiative, there is little to show for the $1billion that went into it. No patient has yet been enrolled in a clinical trial, and most of the funds have gone toward observational studies. 

I am an NIH-funded researcher. I conduct randomized controlled trials (RCTs). I’ve taught Einstein students about RCTs that upended prevailing medical practices and beliefs. We must prioritize patient centered long COVID research as we have done for other debilitating disabilities. 

 

Abandonment, Anger, and Action

No wonder many in the long COVID community are angry. They feel abandoned—not seen, heard, or valued. Their condition is all but absent from scientific funding priorities. Their voices in what matters to them in treatment research are muted. And while exposure to viral illness can trigger health and functional setbacks (twice in my daughter’s case), mask mandates are out, even in many health facilities. 

As for my daughter, to quote a parent from RFK Day, we celebrate small victories—“inch-stones,” not milestones. My daughter works hard at getting stronger. She has access to care and a solid support system, and she just returned to (remote) work with ADA accommodations. And while she realizes her relative good fortune, her life is much changed. As a long COVID survivor she is locked in a daily battle invisible to others, and along with other survivors feels swept under the rug: “Millions of people are missing from public life, but nobody seems to care,” she says wistfully, before hopping onto a text with her friends.

If you or loved ones are living with long COVID, here are some ways you can take action:

• Advocate:
• HR 1616 Care for Long Covid Act- in the US House would create a patient-centered registry, fund research on post-infectious disease treatments, and conduct public education on Long-COVID. This critically important bill has just two co-sponsors. Click here to let your member of Congress know what you think about HR1616. 
• HR 3258 Treat Long COVID Act- in the US House would establish a competitive grant program to create and/or enhance interdisciplinary care centers for Long-COVID and associated conditions.  HR 3258 was introduced in May and has 32 co-sponsors (Representatives J Bowman and N Velazquez are co-sponsors ).  Click here to let your member of Congress know what you think about HR3258.

• Support patient-led groups with time, expertise, advocacy, and money. Here are just a few:
• Long COVID Alliance: an advocate, scientist, and drug-developer network with a focus on accelerating treatment
• Long COVID Justice: grassroots advocacy with an intersectional focus
• Dysautonomia Support Network: resources and support
• Patient-Led Research Collaborative: for patients who are researchers

Here are some other sources of support:

• Job Accommodation Network: free assistance with long COVID disability accommodations
• Disability Rights New York: free advice, mediation, and legal representation on disability discrimination matters

 

Dr. Bonuck is professor of family and social medicine, of obstetrics & gynecology and women’s health, and of pediatrics at Einstein and co-director of the Rose F. Kennedy University Center of Excellence in Developmental Disabilities at Einstein-Montefiore. This is an edited version of a post that originally published on The Doctor’s Tablet Blog