Follow-up, funding critical for millions of long COVID patients

Emotions ran high in a congressional hearing last week as patients from across the country shared stories of lives shattered by long COVID, a condition that can include severe fatigue, shortness of breath, joint and muscle pain, “brain fog,” insomnia, blood clotting problems and other health issues that can linger after infection with the virus that caused the pandemic.

But there was an equal amount of anguish from someone who wasn’t there to testify. Sen. Roger Marshall, R-kan., was among the policymakers in attendance, a role that usually includes listening and questioning. Instead, Marshall, a physician, told of his own family’s struggles. Saying only that it was a “loved one” affected, Marshall spoke movingly of the search for answers, at one point adding that the family had sought help from multiple specialists to no avail.

Marshall is to be commended for sharing the family’s plight, with the personal details serving as a powerful reminder not only of the need to find treatments but that long COVID crosses demographic and political lines. Medical experts testifying before the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP), repeatedly drove home that point, noting that the condition can affect all ages and those who were previously in good health. Perhaps the most harrowing testimony came from a Virginia mom whose 16-year-old daughter has had to drop out of school and still faces an uncertain recovery.

Among long COVID patient advocates, the hearing was understandably considered a milestone, an assessment the public should share. Long COVID is a poorly understood medical condition, with its constellation of symptoms making it difficult to diagnose. That, unfortunately, can lead to skepticism about whether it’s real. At the moment, there are no treatments approved by the U.S. Food and Drug Administration.

The hearing in the halls of Congress before an influential Senate committee will help legitimize the concerns of those who suffer from long COVID. The meeting was admirably free of political point-scoring, with committee members listening respectfully, asking smart questions and repeating variations of “I believe you” to patients who have too often faced doubts from the public and even medical providers.

“Health is a deeply personal thing, so I’m grateful to the advocates who have bravely shared their personal stories in the service of greater advocacy and awareness,” said Sen. Tina Smith, D-minn. “Thursday’s HELP Committee hearing was an important step in information gathering and widening our understanding of long COVID and how this condition is dramatically altering the lives of so many Americans. The stories shared further illustrated that long COVID must be taken seriously by the medical and scientific research communities.”

The bipartisanship is critical because a hearing like this, however admirable, was only a first step in helping millions of Americans get their health and lives back. But developing effective treatments will require sustained focus and support.

Public dollars play a foundational role in medical research. Federal resources will be necessary to unlock long COVID’S mysteries. That will require ongoing congressional action to appropriate dollars and ensure these funds are used wisely and expeditiously. Continuing leadership on this from Smith, Marshall and the committee chair, Sen. Bernie Sanders, I-VT., is vital.

Data backs up the need for follow-up. While estimates on long COVID’S prevalence range widely, the U.S. Centers for Disease Control and Prevention reports that “1 in 13 adults in the U.S. (7.5%) have ‘long COVID’ symptoms, defined as symptoms lasting three or more months after first contracting the virus, and that they didn’t have prior to their COVID-19 infection.”

The agency also reports that “older adults are less likely to have long COVID than younger adults,” a data point contradicting commonly held but erroneous beliefs that the virus is mainly a health threat for elders or those in poor health. “Nearly three times as many adults ages 50-59 currently have long COVID than those age 80 and older,” according to the CDC.

There’s no time to waste, Dr. Ziyad Al-aly said in Senate testimony. “You have a historic opportunity to act. The lives of millions of Americans now and in the future depend on this.” Al-aly is the director of the Clinical Epidemiology Center at the Washington University School of Medicine and Chief of the Research and Education Service at the Veterans Affairs Saint Louis Health Care System.

At the hearing and in a follow-up interview, Al-aly pushed for a new center within the National Institutes of Health (NIH) that would focus on infection-associated chronic illnesses. This would include research not just on long COVID but also on other serious conditions such as myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), Lyme disease and multiple sclerosis developing after infection with the Epstein-barr virus.

Al-aly’s proposal is sensible. These conditions are not well understood, and effective treatments are desperately needed. Focusing research and scientific firepower within the NIH is logical and could remedy concerns that the agency is moving too slowly. A dedicated center could lead to innovation, larger trials and accelerated discovery.

Policymakers at every level of government should advocate for long COVID funding and solutions. Those afflicted deserve empathy, proper care and treatment as soon as possible.

While estimates on long COVID’S prevalence range widely, the U.S. Centers for Disease Control and Prevention reports that “1 in 13 adults in the U.S. (7.5%) have ‘long COVID’ symptoms.