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"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.
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:
"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.
A Sanders Institute screening changed how award-winning filmmaker Josh Fox saw his own documentary, which will be paired with musical performances in New York City this month.
Josh Fox's The Edge of Nature is about more than where nature begins or ends. It's a startling documentary that explores long Covid, PTSD, climate, genocide, survival, purpose, and healing during a time when questions of personal, public, and planetary health converged.
After contracting the virus during the early days of the Covid-19 pandemic, the filmmaker known globally for Gasland—the 2010 Emmy Award-winning documentary that galvanized the movement against hydraulic fracturing, or fracking, for fossil fuels—headed to a one-room cabin in the woods of Pennsylvania, armed with his camera.
Beginning June 14, Fox is set to couple the resulting film with a live musical performance, featuring a 12-person ensemble, for three weeks at La MaMa Experimental Theatre Club in New York City. He started the month at The Sanders Institute Gathering in Burlington, Vermont, previewing a part of the performance solo, with his banjo—signed by U.S. Sen. Bernie Sanders (I-Vt.).
The banjo and songs of Pete Seeger—whose influence Fox can trace back to the folk legend visiting his elementary school—are just part of the film's soundtrack. There are also blue jays and coyotes. The rustle of the forest, filled with bears and beavers. The clicks of typewriter keys. Occasional gunshots in the distance. Radio reports about the intertwined public health and economic crises.
"A lot of the film is about these big lessons that we got during that time and that we have decided don't count anymore. We reduced emissions for the very first time in history enough to meet the goals of [the Paris agreement]," Fox said in an interview with Common Dreams.
Scientists have used the term anthropause "to refer specifically to a considerable global slowing of modern human activities," as over a dozen experts wrote in June 2020 in Nature Ecology & Evolution.
Fox said: "That was a moment that we all remember. We healed as a planet. The skies got clearer. The water got better. Bird song increased in complexity."
The detail about bird songs stayed with Dr. Jehan "Gigi" El-Bayoumi, a professor at Georgetown University School of Medicine who was in the Burlington audience, which included academics, advocates, and policymakers fighting for a better world, focused on issues including climate, inequality, healthcare, and housing.
After the conference, El-Bayoumi was walking outdoors with her mother and spotted a bird. She shared what she learned from Fox's performance—which she described as "sheer brilliance," adding that "if there's anything that's going to save humanity, it's the arts."
Filmmaker Josh Fox performs at The Sanders Institute Gathering in Burlington, Vermont in spring 2024. (Photo: © Will Allen 2024 / via the Sanders Institute)
Another member of the audience was Wendell Potter, a former insurance executive now at the Center for Health and Democracy. Watching the performance, he told Common Dreams, "I just was enthralled."
Fox also spoke with Potter about suffering from long Covid and struggling to get the care he needed, especially with intermittent health insurance coverage. The filmmaker recalled that "Wendell came in and was just absolutely astounded I have no health insurance right now."
Potter, who advocates for major healthcare reforms including Medicare for All, said that "what he shared with me is terrifying, but is something that so many people are facing day in and day out."
While alarmed by Fox's experiences battling for medical care, Potter "was inspired" by his performance and said, "I think he can play a big role in waking people up."
Fox said that performing at the Gathering and speaking with people there, including Potter and El-Bayoumi, woke him up—and inspired him to make some additions to the forthcoming performances.
"Every time I do a performance, I learn," he explained. "And I realized that some of the things that are implicit in the film... meaning I want people and audiences to feel and figure out on their own—at times, I think when we're doing a performance of it, it needs to be explicit."
"Getting to the Sanders Institute was this huge wake-up call. I was like, oh my God, I just made a movie about health."
"I made it from the fossil fuel, climate change angle," Fox said of The Edge of Nature. "Getting to the Sanders Institute was this huge wake-up call. I was like, oh my God, I just made a movie about health."
Since the conference, he has been working on some new lines for the performance. In terms of healthcare lessons from the pandemic, he hopes to highlight that "the vaccines came and made the whole thing a helluva lot less fatal and a lot less scary (for those of us who are educated and believe in science that is). And the vaccines were free for every American!"
"Of course, because we don't have Medicare for All in this country, we still have to pay for cancer, and asthma, and heartbreak of psoriasis, and lupus, and Lyme, and diabetes, and glaucoma, and painful corns, and scabies, and rabies, flu, AIDS, and ME/CFS, every other ailment under the sun from Alzheimer's to ADHD," he now wants to say. "Medical debt once again being America's leading cause of bankruptcy, insolvency, and despair."
He also plans to point out that "hurricane season never used to be a thing in PA. It is now. But this deluge is only the beginning. Our climate system is tipping into uncharted territory. Industrial fossil fuel-based civilization's emissions are trapping us in the planet's fever dream."
"So unless you have a ticket to Jeff Bezos' floating Floridian totalitarian salad spinner in the sky, then you are gonna be stuck down here, in their greenhouse gas chamber. And the billionaire colonizers will keep dreaming of Mars," he will warn. "While down here what's worse than genocide will occur. Omnicide. The murder of all."
Fox plans to have climate experts and advocates in New York City this month for post-performance discussions.
Like Gasland, he also plans to take The Edge of Nature—which has already won the Best Environmental Film Award at the 2023 Byron Bay International Film Festival in Australia—and its musical performance on tour, so audiences beyond NYC can experience it.
"We're going to try to have this piece make an impact," Fox told Common Dreams. "This is obviously an election year. This film was entirely made in Pennsylvania, so we're hoping to take it throughout PA, maybe New Hampshire, Vermont, New York."
"Sometimes that's in a huge arts center," he said. "And sometimes that's somebody's Unitarian church set up and we have 50 people, or it's somebody's backyard or somebody's barn—set up the screen outside on a hillside... Those are some of the most fun. So we don't make a distinction between what is a legit theater and what is somebody's barn... it's all just people."
Reflecting on the
Gasland years, Fox noted that "the reason why we succeeded so many places with the anti-fracking campaign... is because we were talking about public health. Fracking was the scary chemicals across your fenceline that was going to harm your children."
With future performances, Fox said, "what I would love to see—and it's such a no-brainer—is the Medicare for All and climate change/Green New Deal movements coming into the same space."
"And by the way, the Green New Deal is a kind of Medicare for All. Getting rid of the fossil fuel industry is a kind of Medicare for All, because you're simply eliminating all of those illnesses that it causes," he said. "It is a great moment to potentially campaign for both... to break out of our silos."
"We get very siloed in the activist world," he added. "I get siloed in climate and fracking and environmental space. Others are siloed in Medicare for All. So this film is a chance for us to try to work across those two lines."
"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.
"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."