Lisa McCorkell, co-founder of the Patient-Led Research Collaborative (PLRC), knows firsthand the debilitating effects of Long COVID. Since March 2020, she has lived with the condition, navigating its unpredictable symptoms while advocating for greater awareness, research, and policy change. On February 26, 2025, at AAI’s first ever congressional briefing, McCorkell shed light on the reality of Long COVID as an often invisible and episodic disability—one that disrupts millions of lives yet remains widely misunderstood and underrecognized.
The Hidden Struggle of Long COVID
Long COVID affects an estimated 7 to 10% of U.S. adults – nearly 17 million people – as well as millions of children. This complex condition, caused by infection with the SARS-CoV-2 virus, manifests through a wide range of symptoms. Over 200 symptoms have been identified, some are mild while others cause debilitating life-altering challenges.
For many, Long COVID follows a relentless cycle: a baseline of chronic symptoms punctuated by debilitating crashes. “Most of us are in this cycle, where we push ourselves to work and live our lives, only to crash and experience an increase in both the number and severity of symptoms,” McCorkell explained. This episodic nature, combined with the fact that many symptoms are not outwardly visible, makes it difficult for those affected to navigate.
Long COVID Crisis Impacts Millions
The impact of Long COVID extends far beyond individual health. With fewer than 8% of people with Long COVID fully recovering from the disease, the economic toll is staggering. In 2022, Brookings estimated that four million Americans were out of work due to Long COVID (that number is likely higher today). Two-thirds of those affected have seen their ability to work diminished, with many forced to sacrifice social activities and essential tasks just to stay employed.
The financial burden is also immense. Conservative estimates suggest additional medical expenses could be as high as $8,000 per year per patient. Yet securing disability benefits remains an uphill battle. “Eighty-five percent of disability claims are rejected on the first round, regardless of the condition. For Long COVID patients, it’s even harder, especially if they don’t have a doctor well-versed in the disease,” McCorkell pointed out.
Breaking Barriers to Care
One major issue for people with Long Covid is accessing proper care. First, individuals must recognize that they have Long COVID, which can be challenging given the overlap of symptoms with other conditions. Then, they must navigate a healthcare system where only 7% of providers feel very confident diagnosing Long COVID, and just 4% feel very confident treating it. Even in the best-case scenario, where patients find knowledgeable providers and effective symptom management strategies, insurance often refuses to cover necessary medications or tests, leaving many without viable treatment options.
“We do not have a cure, nor do we have any Long COVID-specific approved drugs,” McCorkell stated plainly. “The best we can do right now is manage symptoms with a mix of repurposed drugs, supplements, and other interventions that may marginally improve quality of life.”
A Call to Action
Despite these challenges, there is a clear path forward. McCorkell stressed the need for sustained federal funding for research, including efforts to identify biomarkers and develop targeted treatments. Expanding clinical trials is crucial, as is meaningful patient engagement in research and policy discussions.
Prevention must also be a priority. “We need to do everything we can to prevent additional cases of Long COVID and protect those already affected from worsening due to reinfection,” McCorkell urged. This includes measures like masking in healthcare settings, stronger isolation guidelines and improved COVID-19 vaccines.
According to McCorkell, systemic changes to disability benefits, workplace accommodations, and healthcare access are equally important. Medical education must incorporate Long COVID and infection-associated chronic illnesses to ensure future providers are equipped to diagnose and treat these conditions.
Public awareness is another critical piece of the puzzle. “A third of people in the U.S. still haven’t even heard of Long COVID,” McCorkell noted. “People have the right to know about the risks of chronic illness after an infection. We need to combat the social stigma surrounding this disease.”
As the government continues to make policy changes, there is a real risk of backsliding in the fight against Long COVID. But for the more than 20 million Americans suffering from this condition, progress is not optional. “We must ensure that we are not set back, but that we continue to move forward,” McCorkell concluded. “This is a crisis, and we need a robust response to match its scale.”
