Senate HELP Committee Shows Strong Support for Long COVID
The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care. Watch the recording here.
Nearly all of the Senators on the committee attended the hearing with all of the Democrats present, and 6 of the 10 Republicans appearing. The room was packed with patients and allies who spilled over into the overflow room. Senators shared their own experiences being affected by Long COVID, and heard testimony from patients, experts and a parent of a child with Long COVID.
Chairman Bernie Sanders opened the hearing saying that “we as Congress have not done anywhere near enough and we hope to turn that around.” Senator Sanders spoke about how Long COVID affects 16 million Americans, and that 4 million Americans are out-of-work costing the economy approximately $170 billion a year. He spoke about the escalating risk of developing Long COVID after multiple infections.
“Although you may not have Long COVID after your first infection, each reinfection can increase the risk of developing it,” Sanders said. “If you're under the impression that once you've gotten COVID you don't need to worry about it again – you are mistaken.”
“When I hear of Long COVID, you have not my sympathy but my empathy,” said Ranking Member, Bill Cassidy-R, in his opening statement. “My understanding that this is something that can be devastating… Let's get the research better."
Advocates are calling for Congress to make a “moonshot investment” into Long COVID - at least $1 billion annually over the next ten years to address the problem, as well as hold NIH accountable for ensuring research is spent appropriately on research priorities outlined by the patient community to fasttrack treatments. Researchers, patients, clinicians and policy experts sent President Biden a letter at the end of 2023 urging his administration to address the crisis of Long COVID and other infection-associated chronic conditions.
Former Body Politic president and patient advocate Angela Vázquez testified about her experience with Long COVID, and emphasized the need to ground Long COVID research in the expertise that already exists on infection-associated diseases like myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Studies show that nearly half of the Long COVID community meets the diagnostic criteria for ME/CFS.
“Research [on Long COVID] needs to build on the existing research,” said Vázquez. “Long COVID is not a new thing. ME/CFS is not new. Dysautonomia is not new. Mast cell activation is not new. Those conditions have historically been very under-funded compared to the disability that they have contributed to over generations,” Vázquez is the former President of Body Politic, a Long COVID grassroots organization that is now a project of #MEAction.
Republican Senator Roger Marshall, M.D. said the issue was personal for him as he has a loved one who has Long COVID and has been incapacitated for the past 2 years.
“I tell people it’s like if you had mono that never went away… , we’ve taken my loved one to dozens of doctors. I’ve talked to 40,60,80 [doctors]. I’ve read everything there is to read about Long COVID… so I share your frustration.”
Dr. Ziyad Al-Aly, M.D. testified about the threat of multiple COVID infections triggering Long COVID. Al-Aly is a clinical epidemiologist at Washington University in St. Louis.
“There are zero FDA approved medications for the treatment of Long Covid,” said Dr. Al-Aly. “This must change. People suffering from Long Covid need treatment yesterday. 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.”
Democrat Senator Ed Markey said the numbers are staggering.
“Of people who have had COVID, 22 percent to 38 percent of them are experiencing Long COVID, and that may be an underestimation, according to NIH,” Senator Markey said. “All the warning signs are there… I hope people understand this is not going away.”
Charisse Madlock-Brown, Ph.D., an associate professor of health informatics at University of Iowa, testified about the role of EHR data, and explained the limitations of relying on it for everything.
“On the panel, the expert witnesses were all on the same page,” Madlock-Brown said following the hearing. “Observational studies can be useful, but we need drug trials. We also need better coordination, more distributed involvement and more engagement with scientifically educated patients in new and ongoing studies.”
Advocacy Organizations Applaud HELP COMMITTEE
Advocacy organizations for ME/CFS and Long COVID applauded the HELP committee but called Congress to take action.
“We need Congress to act quickly, decisively and at scale with the size of this crisis. We need to immediately invest in integrating information and services for infection-associated chronic conditions into existing systems for research, treatment, care and support. And we also need tailor-made strategic initiatives and structures we’ve seen make such a difference in specific health crises like HIV/AIDS, with coordination across local, state and federal efforts.”
Gabriel San Emeterio of Long COVID Justice, who is living with ME/CFS, Long COVID and HIV, and attended today’s hearing.
“The Senate has the opportunity to transform the field by providing consistent annual support for research, helping the millions who have developed infection-associated chronic illnesses after immune challenges like COVID. I was moved by the show of bipartisan support: now all that remains is for the Senate to do the right thing.”
#MEAction Scientific Director, Jaime Seltzer.
“The senate hearing today was an important advocacy win for the broad Long COVID and infection-associated diseases community, including people with ME. Our community showed up for this, paying the high price of doing so with their bodies. Bottom line: We did our part. Now it’s the government’s turn to do theirs, by taking action to help the millions of Americans with Long COVID and infection-triggered chronic diseases.”
Alison Sbrana, disability activist with Body Politic
