Post by Nadica (She/Her) on Jun 23, 2024 0:43:27 GMT
NIH documents show how $1.6 billion long Covid initiative has failed so far to meet its goals - Published May 31, 2024
More than three years ago, the National Institutes of Health launched a $1 billion-plus initiative to find the root causes and potential treatments for long Covid, the chronic disease that has quickly changed the lives of millions of Americans.
But a lack of visible progress from the initiative, called RECOVER, has drawn months of criticism from patient advocates, researchers, and lawmakers, including at a Senate hearing last week on the NIH’s budget. “We gave [the NIH] a chance and they bungled it,” said John Bolecek, who has lived with long Covid for two years and has closely followed RECOVER. The program has done nothing “to narrow down what’s actually going wrong with people,” or identify treatments, he said.
As the NIH assembled RECOVER, it selected three core institutions to lead most of the research: New York University, Massachusetts General Hospital, and the North Carolina-based nonprofit Research Triangle Institute. Now, budget and other project documents obtained by The Sick Times, MuckRock and STAT through the Freedom of Information Act show how decisions made early in this process likely contributed to RECOVER’s slow start.
The documents reveal how the NIH set up its flagship long Covid research initiative, including the scientific expertise that government reviewers prioritized in selecting research teams to lead RECOVER and the early goals and timelines of the program. Experts who reviewed the contracts and project documents say the agency set itself up for failure by not selecting scientists fluent in the post-infectious chronic diseases that predate the Covid-19 pandemic and are now commonly diagnosed alongside long Covid.
In NIH contracts with the institutions, the agency set up RECOVER’s goals: “It is a public health priority that we better understand and develop strategies to prevent and treat [long Covid] and that these strategies enable rapid innovation, evolution, and adaptation.”
These goals, as well as others outlined in the documents, are largely unrealized as the first round of funding has been mostly spent, experts say. RECOVER’s aims included estimating how many people in the U.S. are living with the disease as well as the risk of developing it after a coronavirus infection; identifying the disease’s underlying causes; and using feedback from patients in “shaping the research agenda.”
RECOVER funding has primarily gone to observational research
In December 2020, the National Institutes of Health received $1.15 billion from Congress to study and treat long Covid. As of June 2023, nearly all of this money has been allocated.
While many long Covid patient advocates are disappointed with RECOVER’s progress so far, some say the NIH could turn this program around by using $515 million in additional funding, allocated earlier this year, to support high-impact biological research and clinical trials.
“I completely understand why [the long Covid community] is frustrated, I completely understand why they think we’re being slow,” said NIH Director Monica Bertagnolli in an interview. She said RECOVER’s pace was necessary to understand key aspects of long Covid, learn from patients, and set up trials that will produce accurate results. “The infrastructure is now there,” she added. “And we are, with urgency, going to charge ahead as best we can.”
Further information from the NIH, sent in written responses to questions, defended many decisions made in RECOVER, including its selection of research teams to lead the program, inclusion of patient advocates in advisory groups, upcoming scientific publications, and choices about clinical trials.
More than three years ago, the National Institutes of Health launched a $1 billion-plus initiative to find the root causes and potential treatments for long Covid, the chronic disease that has quickly changed the lives of millions of Americans.
But a lack of visible progress from the initiative, called RECOVER, has drawn months of criticism from patient advocates, researchers, and lawmakers, including at a Senate hearing last week on the NIH’s budget. “We gave [the NIH] a chance and they bungled it,” said John Bolecek, who has lived with long Covid for two years and has closely followed RECOVER. The program has done nothing “to narrow down what’s actually going wrong with people,” or identify treatments, he said.
As the NIH assembled RECOVER, it selected three core institutions to lead most of the research: New York University, Massachusetts General Hospital, and the North Carolina-based nonprofit Research Triangle Institute. Now, budget and other project documents obtained by The Sick Times, MuckRock and STAT through the Freedom of Information Act show how decisions made early in this process likely contributed to RECOVER’s slow start.
The documents reveal how the NIH set up its flagship long Covid research initiative, including the scientific expertise that government reviewers prioritized in selecting research teams to lead RECOVER and the early goals and timelines of the program. Experts who reviewed the contracts and project documents say the agency set itself up for failure by not selecting scientists fluent in the post-infectious chronic diseases that predate the Covid-19 pandemic and are now commonly diagnosed alongside long Covid.
In NIH contracts with the institutions, the agency set up RECOVER’s goals: “It is a public health priority that we better understand and develop strategies to prevent and treat [long Covid] and that these strategies enable rapid innovation, evolution, and adaptation.”
These goals, as well as others outlined in the documents, are largely unrealized as the first round of funding has been mostly spent, experts say. RECOVER’s aims included estimating how many people in the U.S. are living with the disease as well as the risk of developing it after a coronavirus infection; identifying the disease’s underlying causes; and using feedback from patients in “shaping the research agenda.”
RECOVER funding has primarily gone to observational research
In December 2020, the National Institutes of Health received $1.15 billion from Congress to study and treat long Covid. As of June 2023, nearly all of this money has been allocated.
While many long Covid patient advocates are disappointed with RECOVER’s progress so far, some say the NIH could turn this program around by using $515 million in additional funding, allocated earlier this year, to support high-impact biological research and clinical trials.
“I completely understand why [the long Covid community] is frustrated, I completely understand why they think we’re being slow,” said NIH Director Monica Bertagnolli in an interview. She said RECOVER’s pace was necessary to understand key aspects of long Covid, learn from patients, and set up trials that will produce accurate results. “The infrastructure is now there,” she added. “And we are, with urgency, going to charge ahead as best we can.”
Further information from the NIH, sent in written responses to questions, defended many decisions made in RECOVER, including its selection of research teams to lead the program, inclusion of patient advocates in advisory groups, upcoming scientific publications, and choices about clinical trials.