Sanders Seeks Public Input for Long Covid Moonshot Legislation

"As chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee, it is my strong belief that the crisis of long Covid is a public health emergency that we can no longer ignore."

That's how U.S. Sen. Bernie Sanders (I-Vt.) began a Tuesday letter inviting public comment on a $10 billion bill he is crafting to address the crisis of at least 22 million Americans enduring chronic or relapsing symptoms after a Covid-19 infection.

"In January 2024, the HELP Committee held a hearing on the topic of long Covid where experts underscored the urgent need to aggressively find approved treatments for this terrible disease, to better educate medical professionals on how to diagnose long Covid, to better understand the risks associated with long Covid, and to identify potential therapeutic options, among many other things," notes the letter.

"Before getting Covid-19 in Los Angeles in March 2020, I was a runner for nearly two decades," Angela Meriquez Vazquez, a long Covid patient and former president of Body Politic, told the panel. "What started as a mild illness progressed over weeks with an increasingly scary set of symptoms, including severe levels of blood clots, a series of mini-strokes, brain swelling, seizures, painful heart palpitations, severe shortness of breath, extreme confusion, and numbness in my face, hands, and legs that progressed to an inability to walk for several days, and new onset of allergic anaphylaxis after every meal."

"We are living through what is likely to be the largest mass disabling event in modern history," she warned. "Not since the emergence of the AIDS pandemic has there been such an imperative for large-scale change in healthcare, public health, and inequitable structures that bring exceptional risks of illness, suffering, disability, and mortality."

Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in Saint Louis and one of the experts who testified earlier this year, pointed out that there are no medications approved by the Food and Drug Administration for treating the condition and "the ongoing and planned trials for long Covid are too slow and too small (i.e. underpowered) to provide definitive answers."

"We developed vaccines at warp speed. We are doing trials for long Covid at snail speed," the doctor said. "We don't go through an earthquake without dealing with its aftermath. We cannot live through the biggest pandemic of our lives without dealing with the aftermath."

Sanders' proposed legislation would provide a decade of mandatory funding to help the National Institutes of Health respond to the crisis. At the NIH, the bill would create a centralized coordinating entity for research activities, establish an advisory board, and require the federal agency to launch a new grant process for clinical trials as well as a database "for the storage and dissemination of de-identified patient data to make long Covid research more accessible."

The bill would also "require federal entities to provide continued education and support to patients, providers, and the public about the ongoing risks of long Covid, as well as how to identify and address it," explains the letter, which has an addendum detailing the plan.

The committee is accepting emailed feedback on the proposal at LongCovidComments@help.senate.gov through April 23.

"In my view, the time is long overdue for Congress to treat long Covid as the public health emergency that it is," Sanders said in a statement. "Congress must act now to ensure a treatment is found for this terrible disease that affects millions of Americans and their families."

Sanders, a longtime advocate of ensuring everyone in the nation has healthcare by passing Medicare for All legislation, stressed that "far too many patients with long Covid have struggled to get their symptoms taken seriously. Far too many medical professionals have either dismissed or misdiagnosed their health problems."

"That has got to change," he asserted. "We cannot turn our backs on the millions of Americans who continue to suffer from long Covid. I look forward to hearing from patients, experts, and researchers about what we must do to address this crisis."