WASHINGTON (AP) — U. S. senators pledged Thursday to push for greater investment in studies of long COVID-19 in a hearing that highlighted patients suffering from the diagnosis and experts on its impacts.
“Long COVID destroyed my daughter’s life as she knew it,” said Nicole Heim, mother of a long COVID patient in Winchester, Virginia. “She is a straight honors student, an active member of the school’s marching band and had an active involvement in buddy organizing. Now she’s isolated and struggles to do her homework. “
“Instead of waiting to graduate from the best school, my 16-year-old daughter is slowly earning 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 demanding situations they faced with personal health insurance companies and Medicaid, as well as emerging treatment prices.
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.
Lingering symptoms of excessive fatigue, chronic pain and neurological problems, among others, still hinder his ability to serve or plan family events, he 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 explained how her application for Social Security disability insurance was denied twice, but since the company isn’t required to tell her why, she doesn’t know if she’ll ever be able to access the program.
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 said a long COVID diagnosis is covered by the Americans with Disabilities Act as “a disabling condition that would possibly require moderate hotels or an SSDI determination. “
Several senators questioned the three witnesses with long COVID about the amount of money they spent on treatment, as well as the time they spent traveling to see specialists and study the disease through themselves.
Minnesota Democratic Sen. Tina Smith has criticized health insurance companies for playing a greater role in caring about long-term COVID patients.
“I feel like our insurance corporations are designed to figure out how to deny care instead of providing care,” Smith said. “And I think those stories illustrate what that means for other people living with long COVID. “
HELP committee chairman Bernie Sanders, an independent from Vermont, said in reaction to Smith’s remark that he plans to “bring the big insurance companies” before the panel on when and how they provide benefits rather than refusing to pay for care.
Kansas Republican Sen. Roger Marshall empathized with the witnesses, saying a close circle of family members had been suffering from COVID for a long time and had spent a lot of time traveling for treatment.
“We’re one of the families where our darling has noticed 30 doctors and there are a lot of long-term COVID clinics,” Marshall said, before raising concerns about how the National Institutes of Health has spent more than $1 billion in federal funding. Funding to help fight long COVID.
“I think if you donate a billion dollars, we could do studies on diagnosis and treatment,” Marshall said.
Sen. Tammy Baldwin, D-Wis. , also raised concerns about how the NIH has spent money through Congress during 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.”
Dr. Michelle Harkins, a professor of medicine at the University of New Mexico who served on the second panel of medical experts, said the study’s work is complex given that long COVID symptoms have effects on other body systems.
“I think the Recover Initiative is really about collecting data, tracking patients and really perceiving the disease,” Harkins said. “We need to be able to administer remedies and healing trials take time to start. But the challenge is that there is no one-size-fits-all remedy.
Doctors and researchers, Harkins testified, want to understand what causes each of the long COVID symptoms and then be able to come up with treatment plans for each of them.
“If you do one thing and get everyone involved, you won’t get any results,” he said. “It’s my feeling that I want to be very transparent so that the expressed patient population sees a benefit. Unfortunately, it’s going to take time and that’s what frustrates everyone.
Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis, said one solution would possibly be to “deeper understand why acute infections lead to chronic diseases. “
This would require a “comprehensive technique to uncover the mechanisms through which viruses produce acute infection leading to chronic disease,” as well as an understanding of 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.”
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 of this program, he said, will be to “conduct clinical trials of behavioral and experimental medicine treatments. “
Dr. Tiffany Walker, an assistant professor of internal medicine at Emory University School of Medicine in Atlanta, told senators that between 15% and 38% of other people who get 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.
Low-income people and marginalized groups are more likely to suffer from long COVID, he 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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by Jennifer Shutt, Georgia Recorder January 18, 2024
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 destroyed my daughter’s life as she knew it,” said Nicole Heim, mother of a long COVID patient in Winchester, Virginia. “She is a straight honors student, an active member of the school’s marching band and had an active involvement in buddy organizing. Now she’s isolated and struggles to do her homework. “
“Instead of waiting to graduate from high school, my 16-year-old daughter is slowly getting her GED from home,” Heim added.
The Committee on Education for Health, Work and Pensions divided the panel into two panels.
The first featured three patients who talked about their difficulties getting a diagnosis, locating the right providers, and then locating medications or remedies that can help them treat 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.
Lingering symptoms of excessive fatigue, chronic pain and neurological problems, among others, still impede his ability to serve or plan family events, he testified.
“I’ve been in poor health for almost 3 years and I feel like there hasn’t been a lot of progress with the long COVID investigation,” Beale said. “I hope Congress can help move the investigation forward. “But for now, I’m looking to make peace with my situation.
Beale explained how her application for Social Security disability insurance was denied twice, but since the company isn’t required to tell her why, she doesn’t know if she’ll ever be able to access the program.
Sen. Tim Kaine, D-Va. , who has been diagnosed with long COVID, said there are a number of issues with long COVID that make it difficult for patients to be approved for SSDI.
But Kaine said a long COVID diagnosis is covered by the Americans with Disabilities Act as “a disabling condition that would possibly require moderate hotels or an 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 has criticized health insurance companies for playing a greater role in caring about long-term 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 reaction to Smith’s remark that he plans to “take the big insurance companies” before the panel over when and how they provide benefits rather than refusing to pay for care.
Kansas Republican Sen. Roger Marshall empathized with witnesses, saying a close circle of family members had been suffering from COVID for a long time and had spent a lot of time traveling for treatment.
“We’re one of the families where our family has 30 doctors and there are a lot of long-term COVID clinics,” Marshall said, before raising concerns about how the National Institutes of Health has spent more than $1 billion in federal funding. funds to help fight long COVID.
“I think if you give somebody a billion dollars, we could have some studies done on diagnosis and treatment,” Marshall said.
Sen. Tammy Baldwin, D-Wis. , also raised concerns about how the NIH has spent money through Congress during long COVID.
“Congress has already appropriated $1. 15 billion to fund NIH studies on long COVID through a multi-pronged network of studies,” he said. “However, I know that the NIH has received critical feedback related to its technique for these studies, which increases the fear that it will do so. “”It doesn’t offer any meaningful treatment for people with long COVID. “
Dr. Michelle Harkins, a professor of medicine at the University of New Mexico who served on the second panel of medical experts, said the study’s work is complex given that long COVID symptoms have effects on other body systems.
“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, want to understand what causes each of the long COVID symptoms and then be able to devise treatment plans for each of them.
“If you do one thing and involve everybody, you’re not going to get any results,” he said. “It’s my feeling that I want to be very transparent so that the expressed patient population sees a benefit. Unfortunately, it’s going to take time and that’s what frustrates everyone.
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.”
This would require a “comprehensive technique to uncover the mechanisms through which viruses produce acute infection leading to chronic disease,” as well as an understanding of 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.
This type of research, he said, can help doctors and researchers in the next pandemic, especially if it’s followed by a chronic illness similar to long COVID.
“It is vital that we are informed about this virus today to face the turbulent waters of long-term pandemics,” Al-Aly said. “We will be classified as a failure if our children face a long-term pandemic and are affected. ” with some other long virus in 2030 or something like that and they don’t know how to deal with it.
Charisse Madlock-Brown, associate professor of fitness informatics at the University of Iowa College of Nursing, testified that there is a “critical need for a Moonshot initiative” for the Cancer Moonshot Program.
“The paucity of clinical trials focused on the underlying reasons and remedies for long COVID is a barrier to progress,” Madlock-Brown said. “A call to action from patients and researchers posits that the U. S. government is not going to be able to do so. “”The U. S. Cancer Moonshot is leading this initiative with an annual investment as the Cancer Moonshot program to motivate global action against this pervasive fitness problem. “
A key priority of this program, he said, will be to “conduct clinical trials of behavioral and experimental medicine treatments. “
Dr. Tiffany Walker, an assistant professor of internal medicine at Emory University School of Medicine in Atlanta, told senators that between 15% and 38% of other people who get 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.
Low-income people and marginalized groups are more likely to suffer from long COVID, he testified.
“Economically disadvantaged populations have been disproportionately impacted by long COVID, with African Americans and Hispanic Americans experiencing higher rates of long COVID,” Walker said. “The lack of coordination in COVID-related long-term care is amplified among underserved minority populations who have a long history of quality physical care, from substandard to affordable.
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Jennifer covers the nation’s capital as a senior reporter for States Newsroom. Their policy spaces come with congressional policies, political and legal challenges, with health care, unemployment, housing, and assistance to families.
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