WASHINGTON — The Biden administration on Tuesday announced plans to ramp up research into long Covid, following scathing criticism from patients and experts.
The White House’s plan includes efforts to improve sluggish enrollment in a major study run by the National Institutes of Health and to create a new research task force to coordinate research into long Covid across federal agencies.
Crucial questions about long Covid remain, including exactly how it will be defined, how prevalent it is among people who are infected with Covid-19, and who is most at risk. Millions of people in the United States are experiencing persistent symptoms after Covid-19 infections, and research will help determine the long-term burden of the pandemic on the health care system and on the economy.
The policy rollout comes as long Covid patients and experts have grown increasingly frustrated with the NIH’s slow pace on long Covid research, as STAT reported last week. The biggest NIH study had only enrolled 3% of its recruitment goal as of March 18, more than a year after the agency received $1.2 billion for the effort.
The administration said it will “accelerate the enrollment” of the NIH study, which is aiming to recruit 40,000 people, but didn’t provide details as to what that effort would practically entail.
Patients have for months expressed concerns about the NIH initiative. They have been frustrated that the NIH’s research so far has focused exclusively on observing long Covid patients, instead of testing treatments that could improve their symptoms. Some patient advocates have described a chaotic, opaque strategy of patient engagement thus far that demands much of patients living with chronic symptoms.
A comprehensive approach to long Covid in the federal government is long overdue and much-needed, said Dianna Berrent, who founded the long Covid patient group Survivor Corps, but it remains to be seen whether a true sense of urgency will emerge.
“We needed commitment to immediate funding for clinical trials yesterday. While it is overdue, the best time to correct the course of a runaway train is always now,” Berrent said.
The Biden administration said Tuesday that now it will ask patients to help shape research design and execution through a recently created task force.
JD Davids, a longtime patient advocate in the HIV/AIDS space who is also living with long Covid, has been pressing the Biden administration to incorporate more structured patient involvement for months. The high-profile attention to the issue is productive, Davids said, but it’s still unclear whether all the new efforts will structurally incorporate patient voices.
“My reaction is that I’m cautiously optimistic, and realistically skeptical,” Davids said.
The Biden administration’s new efforts also come after a group of two dozen prominent Covid-19 experts issued a scathing critique of the federal government’s research efforts so far, describing them as “siloed, with barriers to sharing resources and data.”
They suggested that Biden create an interagency task force to coordinate long Covid work across the federal government, and the White House announced Tuesday it would launch a similar new effort to create a cross-agency research plan. The point person for that effort will be Health and Human Services Secretary Xavier Becerra.
The research ramp-up is one of several long Covid initiatives the White House proposed. The Biden administration will also ask Congress to fund new “Centers of Excellence” to investigate how doctors can use best practices to treat long Covid patients; expand long Covid clinics at Department of Veterans Affairs facilities; educate doctors on recognizing and classifying patients with long Covid; incorporate research into disability policy; and study electronic medical records of veterans.