WASHINGTON — U.S. senators pledged Thursday to push for more funding for long-term COVID-19 research during a hearing that included patients with the diagnosis as well as experts studying its effects.
“Long COVID has taken away my daughter’s life as she knew it,” said Nicole Heim, the mother of a long COVID patient in Winchester, Va. “She was a straight-A student, an active member of her school marching band and had an active group of friends. Now she’s isolated and struggling to do her homework.”
“Rather than looking forward to graduating from high school, my 16-year-old daughter is slowly working toward her high school diploma at home,” Heim added.
The Committee on Health Education, Labor and Pensions divided the hearing into two panels.
In the first session, three patients talked about their struggles with getting a diagnosis, finding the right doctors, and then about medications or treatments that could assist them relieve their symptoms.
They also detailed the challenges they faced working with private insurance companies and Medicaid, as well as the rising costs of treatment.
Rachel Beale, a long-term COVID-19 patient from Southampton County, Virginia, told senators that the disease forced her to leave her career as a human resources director at a community college.
As she testified, ongoing symptoms of extreme fatigue, chronic pain and neurological problems continue to make it complex for her to function normally and plan family events.
“I’ve been sick for almost three years now, and I feel like there hasn’t been a lot of progress in the research on long COVID,” Beale said. “I hope that Congress can help with that, so that research can move forward. But for now, I’m just trying to come to terms with my situation.”
Beale said she was rejected for Social Security Disability Insurance twice. But because the agency was not required to tell her why, she doesn’t know if she’ll ever be able to utilize the program.
Senators question insurers’ policies
Virginia Democratic Sen. Tim Kaine, who was diagnosed with long COVID, said there is a unique set of issues with long COVID that makes it complex for patients to get approved for SSDI.
Kaine did mention, however, that a long COVID diagnosis is covered under the Americans with Disabilities Act as a “disabling condition that may require reasonable accommodations or an SSDI benefit determination.”
Several senators asked three witnesses with long-term COVID-19 how much money they spent on treatment, as well as how much time they spent traveling to specialists and researching the disease on their own.
Minnesota Democratic Senator Tina Smith criticized insurance companies for failing to provide better care for chronic COVID-19 patients.
“I often feel like our insurance companies are designed to figure out how to deny care rather than provide it,” Smith said. “And I think these stories show what that means for people living with long COVID.”
HELP Committee Chairman Bernie Sanders, a Vermont independent, said in response to Smith’s comments that he plans to “take the big insurance companies to the committee” to explain when and how they provide benefits, rather than refusing to pay for care.
Kansas Republican Sen. Roger Marshall expressed sympathy for the witnesses, saying a close family member has long-term COVID and has spent significant time traveling for care.
“We are one of those families where our loved one has been to 30 doctors, and there are not many clinics in the area that treat chronic COVID,” Marshall said, before raising concerns about how the National Institutes of Health has spent more than $1 billion in federal funding earmarked for chronic COVID treatment.
“I think if we gave someone a billion dollars, we could do some research on diagnostics and treatments,” Marshall said.
Wisconsin Democratic Senator Tammy Baldwin also raised concerns about how the NIH spent money provided by Congress for long COVID treatments.
“Congress previously appropriated $1.15 billion in funding for NIH long COVID research through the multi-track research network,” Baldwin said. “However, I know NIH has received critical feedback on its approach to this research, including concerns that it may not provide any meaningful treatments for people with long COVID.”
No single treatment
Dr. Michelle Harkins, a professor of medicine at the University of New Mexico who was on the second panel with medical experts, said the research work is complicated because long-term COVID symptoms often affect multiple systems in the body.
“I think the Recover initiative is really trying to collect data, track patients and really understand the disease,” Harkins said. “We want to be able to deliver treatments, and treatment research takes a long time. But the problem is that one treatment won’t be available to fix everything.”
Harkins testified that doctors and scientists need to understand what is behind each of the long-term COVID symptoms and then be able to develop treatment plans for each one.
“If you do one thing and then get everybody involved, you’re not going to see the result,” she testified. “You have to explain it very carefully to your specific patient population to see the benefit, that’s my feeling. It’s going to take some time, unfortunately, and that’s what frustrates everybody.”
Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis, said one solution might be “a deeper understanding of why acute infections lead to chronic disease.”
This would require “a comprehensive approach to the mechanisms that explain why viruses actually cause acute infection leading to chronic disease,” as well as an understanding of epidemiology and other factors.
“This really requires the involvement of everyone and a really broad, comprehensive approach, an interdisciplinary approach, which I think should be solved by establishing a new institute to deal with this problem,” Al-Aly said.
He believes this type of research could assist doctors and scientists when the next pandemic hits, especially if it is followed by a chronic illness similar to long COVID.
“It is important that we learn from this virus today to really face the difficult conditions of future pandemics,” Al-Aly said. “We will be called a failure if our children face a future pandemic and are hit by another long virus in 2030 or something like that and don’t know how to deal with it.”
Long-term plan to combat COVID?
Charisse Madlock-Brown, assistant professor of health informatics at the University of Iowa School of Nursing, testified that there is an “urgent need for a moonshot initiative,” similar to the moonshot program in cancer treatment.
“The dearth of clinical trials investigating the causes and treatments for long COVID-19 is a barrier to progress,” Madlock-Brown said. “The call to action from patients and researchers is for the U.S. government to lead this initiative with a significant annual investment, such as the Cancer Moonshot program, to inspire global action against this common health challenge.”
A key priority of this program, she said, should be “conducting clinical trials of behavioral and experimental treatments.”
Dr. Tiffany Walker, an assistant professor of internal medicine at Emory University School of Medicine in Atlanta, told senators that 15% to 38% of people who get COVID-19 will end up with long COVID-19.
“When it comes to a direct comparison, it is proportional to the prevalence of diabetes in our population,” Walker said.
She testified that lower-income people and marginalized groups are at greater risk of long-term COVID-19 infection.
“Economically disadvantaged populations have been disproportionately affected by long COVID, with African Americans and Latinos experiencing higher rates of long COVID,” Walker said. “The lack of coordination in long COVID care is compounded in these underserved minority populations, which have historically had poor access to affordable, high-quality health care.”
