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national institutes of health
Sanders Proposes 'Moonshot' Bill to Combat Long Covid Crisis
"The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education," he said.
Aug 02, 2024
Over four months after seeking public comments on long Covid legislation, U.S. Sen. Bernie Sanders on Friday unveiled a bill to help tackle the crisis "that is affecting more than 22 million adults and 1 million children across the United States—and millions more around the globe."
Long Covid "can include a wide range of ongoing symptoms and conditions that can last weeks, months, or even years" after an initial infection, according to the U.S. Centers for Disease Control and Prevention. Symptoms can include brain fog, fatigue, heart palpitations, mood changes, muscle or joint pain, shortness of breath, and difficulty sleeping.
The Long Covid Research Moonshot Act of 2024 would provide the National Institutes of Health (NIH) with $1 billion in mandatory funding per year for a decade to support studies, the pursuit of treatments, and the expansion of care for U.S. patients impacted by the condition.
As Sanders' (I-Vt.) office highlighted, the bill would:
- Require the NIH to establish a long Covid database, advisory board, and a new grant process that would accelerate clinical trials;
- Fund information gathering and public health education;
- Require any new treatments developed by the NIH to be reasonably priced so that every patient can receive it;
- Fund multidisciplinary long Covid clinics that provide comprehensive, coordinated care—especially in underserved, disproportionately impacted communities; and
- Develop and implement best practices for clinical care and social services.
"For far too long, millions of Americans suffering from long Covid have had their symptoms dismissed or ignored—by the medical community, by the media, and by Congress," said Sanders, chair of the Senate Committee on Health, Education, Labor, and Pensions (HELP). "That is unacceptable and has got to change."
"The legislation that we have introduced finally recognizes that long Covid is a public health emergency and provides an historic investment into research, development, and education needed to counter the effects of this terrible disease," he continued. "Congress must act now to ensure treatments are developed and made available for Americans struggling with long Covid. Yes. It is time for a long Covid moonshot."
In addition to Sanders, the bill is backed by Sens. Tammy Duckworth (D-Ill.), Tim Kaine (D-Va.), Ed Markey (D-Mass.), Tina Smith (D-Minn.), and Peter Welch (D-Vt.). It also has support from over 45 groups including Body Politic, Covid-19 Longhauler Advocacy Project, Long Covid Alliance, Infectious Diseases Society of America, Marked by Covid, Mount Sinai Health System, National Partnership for Women and Families, and Patient-Led Research Collaborative (PLRC).
"The act is a historic piece of legislation," PLRC said on social media, sharing some details about the proposal. "We are so grateful for Sens. Sanders, Kaine, Markey, Welch, Duckworth, and Smith's leadership on #LongCovid, and for responding to the patient community's call with this incredible bill."
"This took a tremendous amount of work behind the scenes. PLRC is so honored to have been part of this process and so appreciative of everyone involved!" the group added. "This is a rare opportunity that most illnesses will never have and a chance that may not come again. In the coming months we will need the full support of the community and all allies to rally around this bill, and to call your representatives to support and co-sponsor this bill."
The groups #MEAction and Solve M.E. also support the legislation, and advocates for people with other diagnoses celebrated that the NIH initiative would be directed to "conduct comparative research to understand the similarities and differences between long Covid and other infection-associated chronic conditions with similar phenotypes, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease, and how activities funded by the program could improve understanding of such other conditions."
The bill also states that the program should "conduct comparative research to understand the similarities and differences between long Covid and severe, long-term effects from Covid-19 vaccinations," which were rolled out globally—though unequally and inadequately—during the pandemic.
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Sanders Seeks Public Input for Long Covid Moonshot Legislation
"The time is long overdue for Congress to treat long Covid as the public health emergency that it is," said the Senate HELP Committee chair.
Apr 09, 2024
"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.
We cannot ignore the public health crisis that is Long COVID. On Long COVID Awareness Day, let us commit to doing everything we can to address this horrible condition. The U.S. government must do more to increase awareness and provide additional resources to develop treatments. pic.twitter.com/OLnRkhivm7
— Bernie Sanders (@SenSanders) March 15, 2024
"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."
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Citing Drug Price Concerns, Sanders Says He'll Vote 'No' on Biden's NIH Nominee
"Dr. Monica Bertagnolli is an intelligent and caring person, but has not convinced me that she is prepared to take on the greed and power of the drug companies and healthcare industry."
Oct 24, 2023
Independent U.S. Sen. Bernie Sanders of Vermont said Tuesday that he plans to vote against confirming National Cancer Institute Director Monica Bertagnolli to head the National Institutes of Health, citing concerns over the Biden administration's failure to adequately address the high cost of prescription drugs in the United States.
"Dr. Monica Bertagnolli is an intelligent and caring person, but has not convinced me that she is prepared to take on the greed and power of the drug companies and healthcare industry and fight for the transformative changes the NIH needs at this critical moment," Sanders said in a statement.
"I intend to vote NO at her confirmation hearing on Wednesday," he added. "I have not asked any member of the committee to follow my lead. This should be a vote of conscience."
In July, Sanders—who heads the Senate Health, Education, Labor, and Pensions (HELP) Committee—declined to hold Bertagnolli's confirmation hearing, pressing the Biden administration to take action to lower prescription drug prices.
However, last month Sanderssaid he would allow the confirmation process to continue due to recent actions by the Department of Health and Human Services (HHS) and a commitment he "received from the White House to keep working to lower the price of prescription drugs."
"We need an NIH director who is prepared to take on the greed of the pharmaceutical industry and use every tool at his or her disposal to substantially lower the outrageous cost of prescription drugs," Sanders explained last week.
As Sanders noted Tuesday:
Our healthcare system is broken and dysfunctional. We spend almost twice as much per capita on healthcare as any other nation, while over 60,000 Americans die every year because they can't get to a doctor when they should. Despite our huge healthcare expenditures, our life expectancy, especially for working families, is below most other wealthy nations—and is declining.
Further, the taxpayers of this country provide over $45 billion a year to the NIH for research and development that leads to prescription drugs and treatments. Yet, we pay the highest prices in the world for the drugs U.S. taxpayers help to develop and 1 out of 4 Americans cannot afford to buy the drugs their doctors prescribe.
On Monday, Sanders urged the HHS inspector general to investigate an NIH proposal to grant an exclusive patent license for a cancer treatment produced with public resources to a company tied to a former federal employee.
With a budget of more than $47 billion, NIH is world's largest funder of medical research. According to the agency, last year's research highlights included progress toward an HIV vaccine, advances in Type 1 diabetes treatment, development of a robotic exoskeleton that helps people walk, discoveries about how the biome affects human health, and progress in understanding and treating Alzheimer's disease.
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