Patients struck by long COVID plead with U.S. Senate panel for more research funding

By: - January 18, 2024 7:40 pm
Rachel Beale, a long COVID patient who lives in Southampton County, Virginia, told a U.S. Senate panel about ongoing symptoms that include extreme fatigue and chronic pain.

Rachel Beale, a long COVID patient, wants Congress to boost funding for studying the disease. “I’ve been sick for almost three years and it feels like there hasn’t been much progress with long COVID research,” Beale told U.S. senators. (Screenshot from U.S. Senate webcast)

WASHINGTON — U.S. senators pledged Thursday to press for more funding to research long COVID-19 during a hearing that highlighted patients suffering from the diagnosis as well as experts studying its impacts.

“Long COVID stripped away my daughter’s life as she knew it,” said Nicole Heim, the mom of a long COVID patient in Winchester, Virginia. “She was a straight A honor student, an active member of the school’s marching band and had an active friend group. Now she is isolated and struggles to do her schoolwork.”

“Instead of looking forward to a high school graduation, my 16-year-old is working slowly on her GED from home,” Heim added.

The Health Education Labor and Pensions Committee broke up the hearing into two panels.

The first featured three patients speaking about their struggles getting diagnosed, finding the right providers and then finding medications or treatments that can actually help them address their symptoms.

They also detailed the challenges they’ve faced with private health insurance companies and Medicaid as well as the mounting costs of treatment.

Rachel Beale, a long COVID patient who lives in Southampton County, Virginia, told senators the disease forced her to leave her career as a human resources director at a community college.

The ongoing symptoms of extreme fatigue, chronic pain and neurological issues, among others, still hamper her ability to function normally or plan for family events, she testified.

“I’ve been sick for almost three years and it feels like there hasn’t been much progress with long COVID research,” Beale said. “I hope that Congress can help with that to move the research forward. But for now, I’m trying to make peace with my situation.”

Beale spoke about how her application for Social Security Disability Insurance has been denied twice, though because the agency isn’t required to tell her why, she doesn’t know if she’ll ever be able to access the program.

Senators question insurers’ policies

Virginia Democratic Sen. Tim Kaine, who has been diagnosed with long COVID, said there’s a unique set of problems with long COVID that’s made it challenging for patients to get approved for SSDI.

But Kaine mentioned that a long COVID diagnosis is covered under the Americans with Disabilities Act as “a disabling condition that can require reasonable accommodations or SSDI determination.”

Several senators asked the three witnesses with long COVID about the amount of money they’ve spent on treatment as well as the time they’ve spent traveling to see specialists and researching the illness for themselves.

Minnesota Democratic Sen. Tina Smith criticized health insurance companies for not better providing for long COVID patients.

“I often feel that our insurance companies are designed to figure out how to deny care rather than provide care,” Smith said. “And I think these stories illustrate what that means for people living with long COVID.”

HELP Committee Chairman Bernie Sanders, an independent from Vermont, said in response to Smith’s comment that he planned to “bring major insurance companies” before the panel to explain when and how they provide benefits as opposed to denying to pay for care.

Kansas Republican Sen. Roger Marshall empathized with the witnesses, saying that a close family member has long COVID and has spent considerable time traveling for care.

“We’re one of those families where our loved one has seen 30 doctors and there are not many long COVID clinics around,” Marshall said, before raising concerns about how the National Institutes of Health has spent more than $1 billion in federal funding meant to help address long COVID.

“I think if you give somebody a billion dollars, we could have some studies done on diagnosis and treatment,” Marshall said.

Wisconsin Democratic Sen. Tammy Baldwin also raised concerns with how the NIH has spent the money Congress provided for long COVID.

“Congress has previously allocated $1.15 billion to fund NIH research on long COVID through a multi-pronged research network,” Baldwin said. “However, I know that NIH has received critical feedback regarding its approach to this research, including the fear that it may not deliver any meaningful treatments to people suffering from long COVID.”

No one treatment

Dr. Michelle Harkins, a professor of medicine at the University of New Mexico who was on the second panel that featured medical experts, said research work is complex given that long COVID symptoms often affect different systems in the body.

“I think the Recover Initiative is really trying to gather data and follow patients and really understand the disease,” Harkins said. “We want to be able to do treatments and the treatment trials are taking a while to get going. But the problem is, one treatment isn’t going to be available to fix everything.”

Doctors and researchers, Harkins testified, need to understand what the drivers are behind each of the long COVID symptoms and then be able to find treatment plans for each of those.

“Doing one thing and then having everybody join in, you’re not going to see a result,” she testified. “You have to have it very clarified for your specific patient population to see a benefit, is my feeling. That’s going to take time unfortunately and that’s what everyone is frustrated with.”

Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis, said one solution could be to “more deeply understand why acute infections lead to chronic disease.”

That would require a “comprehensive approach to the onset of mechanisms of why viruses actually produce acute infection that leads to chronic disease” as well as understanding the epidemiology and other factors.

“This really requires an all-hands-on-deck situation and really a broad comprehensive approach, an interdisciplinary approach that should be solved in my view in the form of a new institute to tackle this issue,” Al-Aly said.

That type of research, he said, could help doctors and researchers when the next pandemic hits, especially if that is followed by chronic illness that’s similar to long COVID.

“It is important that we learn the lessons from this virus today to really face the rough waters of future pandemics,” Al-Aly said. “We will be called a failure if our children face a future pandemic and get hit with another long virus in 2030 or something and they don’t know how to treat it.”

Long COVID moonshot?

Charisse Madlock-Brown, associate professor of Health Informatics in the College of Nursing at the University of Iowa, testified there is a “critical need for a moonshot initiative” similar to the cancer moonshot program.

“The scarcity of clinical trials focusing on long COVID’s underlying causes and treatments poses a barrier to progress,” Madlock-Brown said. “A call to actions by patients and researchers posits that the U.S. government leads this initiative with a significant annual investment like the Cancer Moonshot program to inspire global action against this widespread health challenge.”

A key priority for that program, she said, should be “conducting clinical trials for behavioral and experimental medicine treatments.”

Dr. Tiffany Walker, assistant professor of internal medicine at Emory University School of Medicine in Atlanta, told senators that between 15% to 38% of people who contract COVID will end up with long COVID.

“To provide a stark comparison, this is commensurate to the rate of diabetes in our population,” Walker said.

Lower income people and marginalized groups are more likely to contract long COVID, she testified.

“Economically disadvantaged populations have been disproportionately affected by long COVID with African American and Hispanic Americans experiencing higher rates of long COVID,” Walker said. “Lack of coordination in long COVID care is amplified in these underserved minority populations that have a long-standing history of poor access to affordable, quality health care.”

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Jennifer Shutt
Jennifer Shutt

Jennifer covers the nation’s capital as a senior reporter for States Newsroom. Her coverage areas include congressional policy, politics and legal challenges with a focus on health care, unemployment, housing and aid to families.

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