February 26, 2024

Thursday morning, January 18, 2024, the US Senate Committee on Health, Education, Labor, and Pensions (HELP), chaired by Bernie Sanders, held a hearing to discuss the current state of research and clinical practice regarding long COVID: Addressing Long COVID: Advancing Research and Improving Patient Care. Senate.gov provided an overview of the need for and purpose of the hearing:

“The impacts of this pandemic are still being felt by millions of families,” said Sanders. “We cannot turn our backs on the American people who continue to struggle with long COVID. At all levels of government, we must do more to address the health crises countless Americans are living through because of the coronavirus. Lives are at stake. I look forward to hearing from patients, experts, and researchers about what we must do to address this crisis, including the advanced research and patient care that so many Americans desperately need.”

Today, millions of Americans live with long COVID and its many symptoms. These include fatigue, cognitive impairment (commonly referred to as brain fog), muscle or joint pain, shortness of breath, heart palpitations, sleep difficulties, mood changes, and more. With millions of Americans suffering each and every day, more must be done to address this crisis.

Symptoms of long COVID for many have interfered with childcare, exercise, the ability to work, and social activities — disruptions that can impact one’s mental health. According to estimates from the Census Bureau’s Household Pulse Survey, 16 million working-age Americans reported having long COVID – and of those, 2 to 4 million are out of work due to long COVID. For some, the change in job status can affect health insurance, which can further complicate treatment options.

Panelists included: (1) Angela Meriquez Vázquez, M.S.W., Long COVID Patient, Los Angeles, CA; (2) Rachel Beale, M.B.A., Long COVID Patient, Southampton County, VA; (3) Nicole Heim, Parent of Long COVID Patient, Winchester, VA; (4) Michelle Harkins, M.D., Professor of Medicine, University of New Mexico, Albuquerque, NM; (5) Ziyad Al-Aly, M.D., Clinical Epidemiologist, Washington University in St. Louis, St. Louis, MO; (6) Charisse Madlock-Brown, Ph.D., Associate Professor of Health Informatics, University of Iowa, Iowa City, IA; and (7) Tiffany Walker, M.D., Assistant Professor, Emory University School of Medicine, Atlanta, GA.

I watched most of the hearing and am really excited that issues of air filtration, long COVID research and treatment, and more are being discussed by experts in a public setting. I was impressed with many of the panelists, but the remarks made by Dr. Ziyad Al-Aly especially stood out to me. Dr. Al-Aly, who has been researching long COVID throughout the ongoing pandemic, is Director of the Clinical Epidemiology Center and Assistant Professor of Medicine at Washington University School of Medicine in St. Louis. He’s also Chief of Research and Education, Department of Veterans Affairs Health Care System in Saint Louis. 

In his statement, he discussed how widespread long COVID is, how destructive it is to so many bodily systems, the fact that there are zero FDA-approved treatments for long COVID, and the need for oral intranasal vaccines that can stop infection. He also stressed the importance of preventing long COVID in the first place by preventing COVID transmission—which can be facilitated through air filtration and masking with high-quality respirators. He and the other panelists are calling for immediate government action to help fund more research into the causes and treatments for long COVID. 

I’ve transcribed his statement, below, to the best of my ability (a few segments were incomprehensible due to audio problems). If you want to watch the entire hearing, here’s the link.

Long COVID represents the constellation of long-term health effects of COVID-19. It is a multi-system disorder that can affect nearly every organ system. It affects the brain, it affects the heart, it affects the endocrine system, it affects the immune system, it affects the GI system. Long COVID affects at least 20 million Americans. It affects people across the life span. We have kids with long COVID, we have people 100 years old with long COVID. It affects people across the life span and across demographic groups. The burden of long COVID, the burden of disease and disability from long COVID, when you measure it, is on par with the burden of cancer and heart disease. And even if people emerge unscathed after having the first infection, they can still get long COVID after reinfection, and I don’t think enough people really know this fact, or know about this. Recovery rates of long COVID are also low. Between low rates of recovery from long COVID and the cases that are due to reinfection, we are poised to see continued rise in the burden of long COVID until we find better ways to prevent it and treat it.

Now you should be asking me now, how do we prevent long COVID? Well, the best way to prevent long COVID is to prevent COVID in the first place. There is actually no long COVID without COVID. If you go back to 2019, you go back to 2018, none of us have heard of long COVID, have you? You haven’t. It didn’t exist. There is no long COVID without COVID.

We need a sustainable multi-pronged approach to prevent repeated infections that will be embraced by the public. This requires accelerating the development of oral intranasal vaccines that block infections. This is very very very important. Ventilation and air filtration systems are also very important. They can play a major role in reducing the risk of transmission of airborne pathogens.

We also need variant-proof vaccines. What the virus is doing is really continuing to mutate on us. Every few months you’re going to see a new variant. We need a variant-proof vaccine that lasts for a long time, that is durable. That offers durable immunity. People are sick and tired of having to have boosters every few months. We need vaccines that last for five years or so, so they can get it done and get it over with for five years.

We must also understand vaccine side effects. This must be acknowledged and understood very very deeply. This is very very important.

Now you should be asking me also, how do we treat long COVID? You’ve heard it before—there are zero, ZERO approved medications for the treatment of long COVID. So these people [gesturing to the folks suffering from long COVID who have come to the hearing] have nothing to really lean on for curative treatment. Nothing. ZERO. ZERO FDA-approved medications for the treatment of long COVID. This must change. We really need to change this. It’s not beyond the might and the prowess of American medicine to solve this problem. It’s absolutely not. We’ve solved much much harder problems in the past. We just need to focus on this and solve it. We are the best nation on earth and we can solve this. It’s absolutely not beyond our prowess to address this.

Now, people suffering from long COVID need treatment yesterday. The ongoing and planned trials for LC are too slow, and too small. . . . We’ve developed vaccines at record speed, at warp speed. You know what we’re doing for long COVID? We’re doing trials for long COVID at snail speed. This is what we’re doing. We urgently, URGENTLY, need trials, large scale trails to test a broad array of repurposed drugs and development of new drugs to beat long COVID. . . .

So what do we learn from all of this? Well we learn from all of this, that acute infections. What I learned, the lesson number one from this whole pandemic is that acute infections can lead to chronic disease. That pandemics disable people. And this is not new – it happened after the Spanish Flu, but we just ignored it, we swept it under the rug. We call all of this broadly “infection-associated chronic illnesses.” This includes long COVID it includes ME/CFS [Myalgic encephalomyelitis/chronic fatigue syndrome], and other baskets of conditions that emanate from acute infections. Had we connected the dots between acute infections and chronic disease before the pandemic, we’d have been much much better placed to actually address the challenge of long COVID. We failed to connect those dots before the pandemic, let’s not do that same mistake again and be poised and ready to really address the challenge of long COVID and also the next pandemic.

So where do we go from here? The research effort of long COVID must match the urgency and the scale of the problem. This is my opinion, and this is going to acquire a coordinated approach. In my opinion the US should consider the establishment, within NIH, of an Institute of Advanced Infection-Associated Chronic Illnesses. That includes long COVID, ME/CFS that have been ignored for a long time. And other infection-associated chronic illnesses. You have an historic opportunity to act. The lives of millions of people here and around the globe, now and in the future, depend on this. Thank you.