Sanders proposes a long Covid moonshot of $10 billion

WASHINGTON – Bernie Sanders is pushing for a long Covid ‘moonshot’. He released a draft bill this week, a follow-up to a landmark hearing in January that raised alarms about the long Covid-19 crisis as an urgent public health crisis.

The pitch calls for $10 billion in mandatory funding over the next decade to establish a new long Covid research program at the National Institutes of Health. This money – $1 billion per year – would complement and be more secure than current funding put aside to continue the RECOVER study. Although the proposal is still in its early stages in the Senate Health, Education, Labor and Pensions Committee, which the Vermont senator chairs, it could give long Covid researchers more room to find much-needed therapies. Part of the plan would help speed up treatment trials.

A recent one analysis of survey data found that 3 in 10 American adults said they had Covid symptoms that lasted more than 3 months. About 1 in 10 said they still had these symptoms. That’s about 17 million people currently dealing with issues like brain fog or intense fatigue, which can disrupt their lives and engagement in the labor market. About 25% of people with long Covid-19 said the condition limits their activities “a lot,” the KFF report said.

Sanders’ proposal reflects what patient advocates have been asking for since the pandemic began, a demand that has only become more powerful with time (and the shortcomings of existing long-term Covid research). In 2023, patient researcher Lisa McCorkell proposed a long Covid moonshot in the journal Nature. Since then, the idea has gained popularity.

“I am encouraged that Senator Sanders is treating the long Covid-19 crisis as the urgent crisis that it is, and I am pleased that he is responding directly to the community’s calls” for a moonshot, McCorkell told STAT in an email mail. As co-founder of the Patient-Led Research Collaborative, she sees the legislation, and “its focus on quickly launching non-behavioral clinical trials,” as a powerful strategy to help the millions of people who have long suffered from Covid or similar conditions .

If the proposal passes, it would also direct the NIH to create a new, expedited process for researchers to apply for grants to study long-term Covid. The new structure should ensure a faster turnaround time – a final decision within 120 days – for clinical trials of preventive therapies and potential long Covid treatments, such as repurposed drugs. Researchers who receive support from long-term Covid patient organizations would have an advantage in the new application system.

The attention (and federal dollars) focused on the long term has helped raise the profile of other misunderstood conditions, such as myalgic encephalomyelitis, or ME/CFS. Advocates for various chronic diseases associated with infections are trying to seize this moment by lobbying officials to do so a new NIH office to coordinate research into their long-neglected diseases, and for more funding.

Similarly, Sanders’ draft legislation calls for a “centralized coordinating entity” that would include patients to oversee long Covid research efforts across the agency. The director of the long Covid program should be someone who has led studies on long Covid-19 or other infection-associated chronic conditions.

Patients, along with scientists and health care professionals, would be involved in an independent advisory board to review grant applications and guide the NIH’s long Covid research agenda. The board would be led by a body outside the NIH — perhaps the National Academies of Sciences, Engineering and Medicine — to ensure “transparency, accountability and communication of results to the public,” according to a news release about the legislation.

Additionally, the NIH should start a database of de-identified long Covid patient data from federally funded research, and share the information publicly. And a committee of NIH researchers focusing on long-term Covid-19 and similar chronic conditions should issue an annual report detailing what NIH-funded clinical trials have found.

The HELP Committee will gather public comments the proposal until April 23. More committee hearings on the issue are expected before a bill is introduced.