Two-and-a-half years into the Covid-19 pandemic, the Biden administration released its national action plan to address longer-term impacts of Covid-19, which include orphaned children, bereavement, and the disabling condition known as long Covid that is accompanying the disease. The plan offers a good start for addressing long Covid, but leaves much undone.
The whole-of-government plan, published in early August, sketches out how to reckon with the long-term effects of Covid-19 that will weigh on health systems and the economy for decades to come. The report rightly notes that long Covid has “resulted in decreased employment and billions of dollars in lost income,” is a driver of the current labor shortage, and contributes to high inflation.
One in five adults infected with SARS-CoV-2 develop new conditions that could be attributable to Covid-19, including fatigue, breathlessness, and neurological problems that can resemble traumatic brain injury.
The report provides a much-needed accounting of all ongoing scientific research into long Covid and social support services for it across the federal government. It identifies and amplifies key points from patients, researchers, and policymakers. But it falls short of robust, far-reaching goals.
Advocates and patients decry a lack of scientific progress and social recognition for the chronic disease that is upending their lives. Clinical trial research via the $1.15 billion Researching COVID to Enhance Recovery (RECOVER) initiative is slated to begin in late 2022, nearly three years after the first long haulers got sick — and stayed sick. Further, while the list of services and supports the report cites is critically needed, the report does nothing to improve access to such services or educate providers about them.
To do the greatest good, the administration’s action plan will require the right kind of leadership. Three guideposts should inform how this plan is executed and communicated.
Use a disability lens. We believe that long Covid must be viewed as a disability, and actions across all federal agencies should be viewed through that lens.
The concept of disability provides a human rights model formalized in a legal rights framework enabling equity, access, and inclusion via the Americans with Disabilities Act. That includes support for independent living, accommodations from schools and employers, financial support through Social Security, and housing accommodations so disabled people can fully participate in their communities.
Viewing long Covid through a disability lens ensures not only that this condition is taken seriously as a chronic illness, but that rights afforded to people with disabilities are intentionally intertwined through every policy decision. This new generation of chronically ill people fits into a larger big-tent coalition that can fight for them in the broader work for equity for disabled people.
Look to similar post-infectious diseases. Valuable lessons can be learned from post-infectious diseases that long Covid often resembles: myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, or mast cell activation syndrome. Although these disorders have been widely documented across many infections, research about them has been poorly funded. The administration’s plan correctly highlights these diseases. Intentionally pulling from clinical experts and the scientific literature could offer an opportunity to solve the mystery of these conditions for millions disabled by Covid and non-Covid infections.
Employ patient-centered communication and implementation. Efforts to understand and address long Covid must not just validate the experiences of people with it but must lean on their wisdom as a vital part of the policymaking process. Federal health agencies should work directly with leaders in the long Covid patient movement, including the Patient-Led Research Collaborative, a group of long haulers with science backgrounds who published the first research on the condition. They are the experts, by virtue of lived experience, and they ought to help drive the research agenda.
The best way to prevent long Covid is to prevent infection in the first place. For the Biden administration’s long Covid strategy to work, it must continue emphasizing public health precautions such as vaccines and wearing masks as needed. Of course, the administration’s Covid plans also rely on Congress approving the president’s 2023 budget and making significant investments as additional Covid relief funds are needed to keep all of these programs on track.
For those with long Covid, the best initial treatment may well be rest. In order for patients to have the ability to rest, policies for short-term disability, worker’s compensation, and school and employer accommodations should be fully attuned to long haulers’ needs, addressing their health requirements so they can still pursue an education or provide for themselves and their families.
The Biden administration’s report correctly emphasizes that symptoms alone are all that are needed for health care providers to diagnose long Covid. But a huge gap in diagnosing long Covid is that no biomarker has been identified to delineate an underlying cause, and no single test can definitively diagnose the condition. Discovering underlying molecular markers must be a priority to improve clinical care, reduce gaslighting of people living with long Covid, and streamline their process into social safety net programs.
American scientists have always rallied to big challenges like creating the computing revolution or landing on the moon. During the Trump administration, public-private coordination in Operation Warp Speed developed mRNA vaccines to protect people against Covid-19 faster than any other vaccine in history. As vice president, Biden championed his own “moon shot,” projecting a new vision for cancer research. Today, his administration ought to attack long Covid with the same urgency and ambition.
This program should be quarterbacked by an official within the White House and supported across all relevant agencies through future administrations. It should convene top post-viral experts who’ve already identified drug candidates to test in trials large enough to produce valid results. It should also coordinate with pharmaceutical companies to compress timelines and fast track repurposed drugs. Just as with Operation Warp Speed, it may be possible to accomplish in a year what might otherwise take a decade or more. A muscular program tackling long Covid would yield a big return on its investment and a model for patient-centered research across all complex, chronic illness.
The pandemic rages on, and SARS-CoV-2 is etching itself further into the lives of millions of long haulers. It’s time for a concerted effort to prevent, treat, and maybe even cure long Covid.
Ryan Prior covered the Covid-19 pandemic as a science writer for CNN. His book, “The Long Haul,” will be published by Post Hill Press/Simon & Schuster in November. Kimberly Knackstedt is a senior fellow at the Century Foundation and co-director of the Disability Economic Justice Collaborative. She served as the White House’s first Director for Disability Policy from 2021 to 2022.