Sen Bernie Sanders, Ind.-VT, who chairs the Senate's Health, Education, Labor, and Pensions (HELP) committee, yesterday released a draft of proposed long-COVID moonshot legislation, which would earmark $1 billion per year over 10 years for long-COVID research over the next decade.
Input sought to help shape language
In a statement, Sanders asked the long-COVID community, especially patients, families, researchers, and the medical community, to comment on how the proposal can be strengthened and improved before he formally introduces the legislation. He included an email link for comments, which are due by the end of the business day on April 23.
Far too many patients with Long COVID have struggled to get their symptoms taken seriously.
Sanders said the time is overdue for Congress to treat long COVID as the public health emergency that it is. "Congress must act now to ensure a treatment is found for this terrible disease that affects millions of Americans and their families," he said. "Far too many patients with Long COVID have struggled to get their symptoms taken seriously."
Along with the major boost in research support, the draft legislation also creates a centralized long-COVID research coordinating entity within the National Institutes of Health (NIH), require the NIH to establish a new grant process for long-COVID clinical trials, require the NIH to establish a long-COVID database, and require federal agencies to provide continued education and support to patients, providers, and the public.
'A step in the right direction'
In January, the Senate HELP committee held a hearing to get input from patients and healthcare providers on challenges with battling long COVID, a condition that affects an estimated 22 million Americans.
This is a significant step in the right direction
The NIH had launched a $1.5 billion Researching COVID to Enhance Recover (NIH RECOVER) Initiative to study how to identify and treat long COVID. Last August, the Department of Health and Human Services announced the formation of the Office of Long COVID Research and Practice to manage the nation's response and coordinate clinical trials across federal departments.
However, researchers and advocates have said a moonshot initiative is urgently needed, due to a disjointed response and slow progress with treatments.
Ziyad Al-Aly, MD, a clinical epidemiologist at Washington University in Saint Louis and is part of a team that first characterized long COVID, testified at the January hearing. On X (formerly known as Twitter) yesterday he said he was delighted to see the draft legislation. "This is a significant step in the right direction."
Editorial note: Corrected story clarifies $1 billion each year over 10 years.
