Doctors, patients testify at first Long COVID Congressional hearing
CHICAGO (CBS) – For the first time, members of Congress held a hearing on Long COVID and the need for research and resources to address the challenges faced by millions of Americans.
On Thursday, the Senate Committee on Health, Education, Labor & Pensions heard testimony from Long COVID patients, frontline doctors, and researchers.
This comes over four years after COVID-19 was declared a pandemic by the World Health Organization. Over 1 million Americans have died from contracting the virus, and millions were left disabled.
Led by U.S. Sen. Bernie Sanders (I-Vermont), the focus was on advancing research and improving patient care.
One of the panelists and leading doctors researching Long COVID, Dr. Ziyad Al-Aly, joined the CBS 2 Chicago stream to break down the significance of the hearing. He is a clinical epidemiologist at Washington University in St. Louis.
Here's a breakdown of the testimony.
What is Long COVID?
Long COVID is an all-encompassing name for the long-term symptoms and health effects a person can experience after contracting COVID-19, regardless of the severity of the case. Long COVID is a disorder that can impact almost all parts of the body, including the heart, brain, immune system, and gastrointestinal system. Long COVID can be considered a disability when it "substantially limits one or major life activities," according to the U.S. Department of Health and Human Services.
Symptoms can linger for weeks, months or years, according to the National Institutes of Health (NIH). More than 200 symptoms have been documented to be related to Long COVID including chest pain, tinnitus, irregular menstruation, nausea, extreme fatigue, and cognitive impairment, to name a few.
Al-Aly, who made the first systematic characterization of Long COVID and has conducted some of the most widely-cited research on the disorder, testified on Thursday. According to his research, at least 20 million Americans currently have Long COVID, and the burden is on par with cancer and heart disease. COVID-19 was the fourth leading cause of death in 2023, per the National Center for Health Statistics.
People can get Long COVID even after reinfection, something that most of the general public does not know, said Al-Aly. Research from the NIH found that the likelihood of getting Long COVID increases each time someone is infected with COVID-19.
According to CDC data, marginalized communities are disproportionately affected by COVID-19 and Long COVID. This is not because the virus discriminates but because of preexisting barriers, such as restricted access to healthcare and working public-facing jobs.
"Between low rate of recovery and new cases from reinfection and breakthrough infection, Long Covid will continue to increase until we find better ways to prevent it and treat it," Al-Aly said.
Patients' testimonies
Angela Meriquez Vázquez, former athlete and former president of Body Politic
"I was left to fend for myself from bed that first year because I did not fit the profile of who was considered high-risk," Angela Meriquez Vázquez said in her testimony to the senate. Vázquez described herself as a disabled former athlete and Long COVID patient. She was a runner for nearly two decades.
What started as mild symptoms she said, progressed into an "increasingly scary" set of symptoms, such as severe levels of blood clots, a series of mini-strokes, brain swelling, seizures, painful heart palpitations, and more.
"I had many clinical signs that something was wrong...all were dismissed by doctors as anxiety," she said. Now, she said her symptoms are finally being verified by "overdue and still underfunded research" as Long COVID.
Her Long COVID was accompanied by other diseases such as chronic fatigue syndrome (ME/CFS), which can cause flare-ups if she overexerts herself. She can work from home but not much else. Vázquez takes 12 different prescription medications, including IV treatments.
"We are living through what is likely to be the largest mass disabling event in modern history. 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," Vázquez said in her closing statement.
Rachel Beale, mother, wife and former HR worker
"I had a very full life before I got sick. Long COVID has affected every part of my life. I wake up every day feeling tired, nauseous, and dizzy," Rachel Beale said in her testimony. Her anxiety and depression are now exacerbated by being sick for so long. Long COVID also triggered her to develop fibromyalgia.
"Having to stop working because of my health has been devastating," she said. Beale used to work in Human Resources at a local community college in a small town in Southeastern Virginia. She tried to go back to work part-time but eventually transitioned to long-term disability and was separated from her job. Since 2021, she has been denied twice for Social Security Disability Insurance.
Beale now has to plan around her sickness. "If something is coming up, I try to get as much rest as possible. I know that I will have a crash for the next few days," she said.
Vázquez and Beale both shared that traveling to testify would likely risk a flare-up of their own symptoms and expect a possible crash from the exertion. "I hope that Congress can help move the research along," Beale said at the end of her statement.
Nicole Heim, mother of Long COVID patient
"Long COVID took my straight 'A' honors student, talented flutist, and member of the school's marching band with an active friend group and stripped her of life as we knew it," Heim said. Her daughter contracted COVID when she was 14 years old. Now 16, she has to be homeschooled and no longer able to participate in the marching band.
"One story that is rarely shared is that of our children and the devastating physical and mental long-term effects of this virus. My daughter is just one example, and I am here to share her story in the hopes that it may help other families," Heim said.
Her daughter received a Long COVID diagnosis after being transferred to another hospital three hours away from their home after being admitted into the emergency room for low blood oxygen. Some of her symptoms included increased heart rate, weight loss from daily vomiting, severe brain fog, and depression. Heim said her daughter's anxiety has also intensified since COVID, leading to increased panic attacks.
Her daughter received two years of care at the Children's Pediatric Long COVID clinic in Washington, D.C. Heim said thanks to testing, bloodwork, physical therapy, supplements, and medications, most of her daughter's symptoms are manageable or under control.
"I feel so grateful for the treatment my daughter is receiving at Children's, but I know there are many other parents and children struggling, not only with the Long COVID diagnosis but also to find some symptom relief," Heim said. She had to travel hours from their home in West Virginia for the appointments.
She asked the committee to increase awareness around pediatric Long COVID and that there should be some screening protocol for Long COVID, much like the ones for depression at the doctor's office.
Doctor's call for urgent response and more research
Right now, there are no FDA-approved medications for the treatment of Long COVID. The trials for medicine are too slow and too small, according to Al-Aly.
"People suffering from Long COVID needed treatment yesterday," he said.
New research from multiple studies shows vaccines reduce the risk of getting Long COVID in adults. On the other hand, Paxlovid, the main antiviral for COVID-19, does not reduce the risk.
More accessible research and clinics
Because Long COVID is a multisystem disorder, it requires multiple types of doctors and tests to be diagnosed. The panelists called for more clinics to be opened all across the country.
"A patient might need to see a neurologist, a cardiologist, and an internist, all for the same diagnosis of Long COVID," Dr. Michelle Harkins said in her testimony. She is an ICU doctor and a co-investigator of a Long COVID study.
Long COVID clinics exist, including Post-COVID Care Centers (PCCC), which provide a multidisciplinary and rehab-focused approach to their treatment plans. Still, Harkins said there are not enough, and the open ones are mainly located in bigger cities.
Although specialized care is necessary, the panelists also noted that all primary care doctors must be educated about the signs and symptoms of Long COVID.
"It is imperative to support efforts to ensure primary care providers are appropriately trained and are competent to provide Long COVID care, with the ultimate goal of decentralization to ensure sufficient care access," Dr. Tiffany Walker said in her testimony. She is an assistant professor of internal medicine at Emory University. She works with the RECOVER Initiative, one of the world's largest and most diverse cohorts of Long COVID patients.
Establishing clinical guidelines to support the accurate diagnosis of Long COVID is imperative, Charissa Madlock-Brown said in her testimony, an associate professor of Health Informatics at the University of Iowa College of Nursing.
Harkins recommended expanding investment into a national network for Long COVID tele-mentoring, a way for healthcare professionals nationwide to connect virtually and receive training, support, and learn new information.
Similarly, Madlock-Brown shared her insights on the benefits of having a database system for Long COVID research.
The con of RECOVER, Harkins said, is that "current funding for clinical trials is largely siloed through the RECOVER mechanism, stifling opportunities for further innovation. Given the prevalence and functional impact of this disease, funding for clinical trials needs to occur at a much greater scale and should not be limited to one institution or consortium."
According to ClinicalTrials.gov, there are only 12 clinical trials for experimental medicine for effective treatment for long COVID.
"We developed vaccines at warp speed. We are doing trials for Long Covid at snail speed," Al-Aly said.
Harkins asked the committee to look into ways to provide guidance on making the insurance process more streamlined for Long COVID patients, such as billing codes. Evaluations and diagnosis are more complicated than a simple blood test, so Harkin also urged insurance companies to cover access to these multidisciplinary clinics and various assessments.
Connecting the dots of acute infection to chronic disease
Al-Aly urged the Senate to consider the establishment of an Institute for Infection-Associated Chronic Conditions (IACC).
"The idea that a virus that produces acute infections can also cause chronic disease is not new. We just ignored it for 100 years," Al-Aly said, referencing the 1889 Russian Flu, the 1918 Spanish Flu, and polio.
He believes if researchers had connected the dots between acute infections and chronic disease at the government level before the coronavirus pandemic, they would be in a much better position to tackle Long COVID.
"You have a historic opportunity to act. The lives of millions of Americans now and in the future depend on this," he said. He urged Congress to work together to approve at least $1 billion annually to research the disorder and other IACCs.
Madlock-Brown urged for a moonshot initiative, comparative to President Biden's 2016 Cancer Moonshot, launched to help foster collaboration and data-sharing between researchers and scientists.
Long COVID is like the aftermath of an earthquake
Al-Aly called for a multilayered, multipronged approach, as he wore a beige KN95 mask as he testified. He compared the need for urgent and proportional response to how we respond after a major earthquake.
"We did an amazing job proofing our buildings against earthquakes that happen once every few decades or few centuries. Why don't we protect our buildings against the hazards of airborne pathogens. We can and should do this," he 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. That aftermath is Long Covid. We must address the challenge of Long Covid."
The entire hearing can be watched here.
The Respiratory Health Association compiled a list of Long COVID clinics by state.