3 Years Into Long COVID: Where Do We Go From Here?

Lisa McCorkell, MA


June 29, 2023

In April 2021, after 13 months of having long COVID and helping conduct two patient-led research studies on the condition with the Patient-Led Research Collaborative (PLRC), I testified to Congress about what was needed to address the crisis. As I Zoomed in from my apartment in Oakland, California, downing my salty water to help tame my tachycardia, I felt hopeful that policymakers were paying attention and would take action. They seemed engaged and concerned as they made remarks and asked questions.

In my testimony, I called for support of the COVID-19 Long Haulers Act and the creation of a Federal Advisory Committee. I explained why we need to have increased access to post-COVID clinics, do a better job estimating long COVID's prevalence, ensure long-COVID research is inclusive and historically informed, and ensure medical care and treatment is affordable. I also laid out why people with long COVID needed increased workplace protections and accommodations, expanded access to disability benefits, and better access and funding for paid sick and family leave.

Over 2 years later, millions of more people are sick. COVID and long COVID cases are increasing daily. Yet, few of these policies are implemented, which has put patients in a position with little support and treatment options and healthcare providers with few resources and guidance.

Despite being over 3 years into the pandemic and members of Congress themselves experiencing long COVID, the COVID-19 Long Haulers Act never even came to a vote, and no specific long-COVID legislation has been enacted. In August 2022, the US Department of Health and Human Services (HHS) announced in theNational Research Action Plan on Long COVID that an Advisory Committee on Long COVID would be created; but, as of writing this, it still does not exist.

Even though more post-COVID clinics have been established and the Agency for Healthcare Research and Quality has issued a funding call to support them, they continue to vary greatly in both quality of care and accessibility. Many have years-long waitlists. Many still require positive COVID tests, despite clear evidence of accessibility and accuracy issues. Several have closed their doors, even in the face of escalating need.

In other words: We have reached a new point of crisis in the pandemic. Even though federal health agencies, the White House, and even the World Health Organization have all declared the public health emergency over without implementing any long-term policies that can protect people from COVID and support the most vulnerable, the need for better care, treatment, and support has never been greater.

We do now have a reliable estimate of long COVID's prevalence thanks to the Household Pulse Survey. However, these estimates, and the disease itself, continue to at times be ignored or dismissed by pundits and even some researchers and clinicians.

And although there has been a stunning amount of research on long COVID, too little is properly informed by existing infectious-onset chronic illness research, resulting in studies that miss key symptoms, conditions and underlying mechanisms.

HHS released guidance on long COVID as a disability under the Americans with Disability Act, Section 504, and Section 1557, and the Department of Labor has a webpage with resources. Yet, people are still experiencing termination, forced quitting, and a lack of accommodations in the workplace, with a conservative estimate of 4 million out of work. No improvements have been made to access for disability benefits, with a severe backlog and 85% of claims rejected on the first round.

Finally, affordability of medical care and treatment as well as paid sick and family leave have worsened since I testified before Congress in 2021, with the end of the public health emergency resulting in the end of crucial Medicaid flexibilities and states' COVID sick pay having expired.

Meanwhile, now approximately 6% of all US adults are currently experiencing long COVID, with Hispanic/Latinx individuals, transgender individuals, and cis female individuals facing the highest rates.

These prevalence numbers do not even include children, who are also experiencing these symptoms and have large impacts to education and extracurricular activities. About 81% of people with long COVID face activity limitations, and 25% of people with it face significant activity limitations resulting from symptoms and conditions like cognitive dysfunction, post-exertional malaise, organ damage, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, mast cell activation syndrome, and small fiber neuropathy, among many others. Some are losing jobs and homes, being left by loved ones, missing birthdays and being with friends, and being unable to watch TV or listen to music. Given COVID's unmitigated spread, with at least 1 in 10 people infected with the virus developing long COVID and reinfections increasing that risk, our community is unfortunately growing larger and larger as the days pass.

We have made tremendous progress in a short amount of time on identifying possible mechanisms, but this has not translated to a meaningful federal response that has improved patients' lives. Healthcare providers are still often unfamiliar with long COVID and its associated conditions. And even for those clinicians who are familiar, there are no US Food and Drug Administration (FDA)–approved treatments targeting potential mechanisms of long COVID.

Patients have been left to try a patchwork of off-label drugs, supplements, and pacing, an activity-management technique for people who experience post-exertional malaise, all of which may only somewhat manage symptoms. Few clinical trials are underway, with critical research money being spent on trialing exercise instead of drugs that have shown evidence of effectiveness in long COVID and associated conditions.

It may be easy to dismiss the reality of long COVID when it's not your or your loved one's reality. It may be tempting to move on from the pandemic for those who haven't been as directly affected. But to do so ignores and neglects disabled people, both those disabled now and those who will become disabled.

This is an urgent crisis, and we need to treat it like one. We need an Operation Warp Speed for Long COVID. We need to revolutionize the workplace; embed a disability economic justice framework in policy solutions; and address long-standing systemic barriers that keep disabled people, particularly disabled people of color, in a cycle of poverty.

In addition to the list of unfulfilled recommendations from 2 years ago, we need an equitable response starting with:

  • A Ryan White Care Program for Long COVID: We should replicate the urgent efforts of the HIV/AIDS crisis to get vital research and medical breakthroughs. This means funding local and state governments and community-based organizations to provide wraparound care and treatment services to people with long COVID and associated conditions that are culturally competent and utilizes community health workers. We need to establish education and training centers modeled after the AIDS Education and Training Centers Program and incorporating lessons from the Centers for Disease Control and Prevention's Project Echo.

  • More clinical trials and therapeutics: We need more clinical trials, prioritizing what the patient community wants to see trialed on the basis of their lived experiences and relevant research in related infection-onset chronic illnesses (eg, antivirals, antihistamines, anticoagulants, immunomodulators). Trials must be inclusive of people with both confirmed and suspected COVID cases, accessible to people with severe long COVID, and have a design that considers and measures differences based on illness duration, where patients are in their menstrual cycle, any mast cell reactions, and post-exertional malaise from clinic visits or the intervention itself.

  • Action by the FDA: The agency must prioritize approval of long-COVID clinical trial protocols, encouraging quality of life endpoints and use of existing biomarkers as well as not requiring a positive COVID test for inclusion. FDA officials also need to consider options like expanded access, fast-track designation and breakthrough therapy designation as drugs are developed and repurposed, given the severity and impact of many people's symptoms. The agency must also require that in any clinical trial of COVID therapeutics, there be a long COVID endpoint and a subgroup of people with long COVID, to account for evidence that some acute COVID therapeutics reduce the likelihood of long COVID and/or can lessen or resolve symptoms.

  • Sustainable, transparent and coordinated research: Learning from the successful HIV playbook, we need an Office for Long COVID and Associated Conditions Research in the National Institutes of Health Director's Office to coordinate research on these conditions across the Institutes, establish a comprehensive research agenda, ensure meaningful engagement of patients and allow for a sustainable source of funding for these conditions.

  • Communication campaigns: At federal and state levels, we need massive public and provider education campaigns on long COVID - to help prevent Long COVID, educate the public on what they may be experiencing and enable providers to provide high-quality and competent care and treatment for long COVID and related infection-associated chronic illnesses.

Over the past 3 years, patient groups, including PLRC, COVID-19 Longhaulers Advocacy Project, Body Politic, Long COVID Justice, the Long COVID Alliance, and so many more have presented policy recommendations and co-sponsored bills like the CARE for Long COVID Act. Yet, little action has been taken.

The pressing needs I presented to Congress 2 years ago are still unmet, with disastrous consequences for people's lives. Political hurdles and funding constraints are mere excuses. We need action, we need it now, and we know exactly what to do.

Lisa McCorkell is the co-founder of the Patient-Led Research Collaborative, a group of people with long COVID and associated conditions who conduct research on long COVID and advocate for policies that improve outcomes for people with long COVID and all disabled people. She is the co-author of several key research studies on long COVID including a landmark review in Nature Reviews Microbiology. She has a master's in public policy and previously worked for the State of California on Supplemental Nutrition Assistance Program policy. She was named one of Nature's 10 people who shaped science in 2022.

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