NIH’s Long COVID studies need to speed up, senators say

Two Democratic senators are pushing the National Institutes of Health to pick up the pace on research into “long Covid.”

U.S. Sen. Sheldon Whitehouse, D-Rhode Island

U.S. Sens. Sheldon Whitehouse, D-R.I., and Ed Markey, D-Mass., wrote a letter to the NIH to express their dissatisfaction about progress in studies of long-term symptoms of COVID-19. Both senators released public statements along with copies of the April 20 letter to the NIH, the federal government’s primary source of funds for medical research.

“We are concerned by reports that the agency has been slow to launch COVID research efforts and prioritized long COVID observational studies over investigations of possible treatments and therapeutics to help those suffering from its symptoms,” the senators wrote.

Sen. Ed Markey, D-Massachusetts

Congress gave the NIH $1.15 billion for studies of long COVID in December 2020. The lawmakers asked how much of that money is left and if the agency is using any other sources of funding for long COVID studies.

Whitehouse and Markey also said they were concerned by reports the NIH is struggling to recruit long COVID patients for studies. They also note that without more research, patients are at greater risk of turning to ineffective or potentially dangerous treatments.

“While research on the underlying science of long COVID is critical to enhancing our understanding of the condition, trials and research on treatments may help provide relief to individuals experiencing the effects of long COVID today,” the lawmakers wrote in the letter.

“It is also critical that NIH and grantees involved in long COVID research engage with the patient community to ensure long COVID patients are a central partner in this research.”

The lawmakers noted the research on long COVID is still “in its infancy.”

“There are currently no evidence-based treatments for long COVID,” the senators wrote. “In the absence of effective therapies, we are concerned by reports of individuals pedaling unapproved treatment regimens to vulnerable patients.”

The lawmakers asked the NIH what barriers they are facing in securing volunteers for long COVID research and how the agency plans to solve the problem.

Markey and Whitehouse asked the NIH to respond to its letter by May 15.

In addition to expressing a simmering frustration among some over the pace of the NIH’s research into long COVID, the letter is noteworthy for political reasons as well. The NIH has long enjoyed strong popularity among Democratic and Republican lawmakers. Congress authorized $45 billion for the NIH in the 2022 budget, a $2.25-billion increase.

Plus, the two Democratic senators are members of President Biden’s party.

• Related: Biden’s proposed NIH budget draws criticism

The letter was hardly scathing. The lawmakers asked if Congress could do more to support the long-term effects of COVID-19, including providing additional funding.

Long COVID has received more attention in Washington recently.

U.S. Sen. Tim Kaine, D-Va., sponsored legislation to expand research of long COVID. In announcing his legislation, Kaine said he has experienced some mild, recurring symptoms two years after first contracting the coronavirus.

It’s unclear how many people are experiencing long COVID. The Government Accountability Office says anywhere from 7.7 million people to 23 million people have developed long COVID. An estimated 1 million Americans have had to stop working due to long COVID.

The U.S. Centers for Disease Control has said some people can experience long COVID even if they only had mild symptoms when they were infected with the coronavirus. Symptoms of long COVID include fatigue, shortness of breath, coughing, chest pain and stomach pain, among others, the CDC says.

More than half of those who had COVID-19 suffered some effects of long COVID six months later, according to a recent study published in Jama Network Open. The most common issues were functional mobility impairments, pulmonary abnormalities, and mental health disorders. The study suggested that symptoms of long COVID could challenge the capacity of healthcare systems, particularly in less affluent countries.

A study published in Nature Medicine in February showed COVID-19 can pose long-term risks of cardiovascular problems. The study of more than 153,000 veterans with COVID-19 showed that after the initial 30 days of infection, those who have had COVID-19 are at increased risk for heart disease, stroke, heart failure and other issues.

In addition to the letter to NIH, Whitehouse wrote a separate letter to the Social Security Administration regarding reports that some with long COVID are having trouble getting disability payments.