by Joyce Frieden, Washington Editor, MedPage Today October 5, 2021

WASHINGTON -- National Institutes of Health (NIH) director Francis Collins, MD, PhD, will step down at the end of the year, the agency announced Tuesday.

"It has been an incredible privilege to lead this great agency for more than a decade," Collins said in a statement. "I love this agency and its people so deeply that the decision to step down was a difficult one, done in close counsel with my wife, Diane Baker, and my family. I am proud of all we've accomplished. I fundamentally believe, however, that no single person should serve in the position too long, and that it's time to bring in a new scientist to lead the NIH into the future."

Collins, 71, was appointed as NIH director in 2009 by President Obama, and was asked by both President Trump and President Biden to remain in the job. Prior to becoming NIH director, he served as director of the National Human Genome Research Institute (NHGRI) from 1993 to 2008, where he led the Human Genome Project.

As NIH director, Collins started the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a multi-billion-dollar research project involving brain-related diseases such as Alzheimer's and psychosis. He also worked closely with then-Vice President Biden to launch the Cancer Moonshot Initiative to develop cancer treatments. Other initiatives Collins worked on include the HEAL (Helping to End Addiction Long-term) Initiative on the opioid crisis and the Rapid Acceleration of Diagnostic (RADx) program for development of diagnostic tests for COVID-19.

Collins is well known in Washington for riding his Harley-Davidson motorcycle around town and for his musicianship, including leading the Affordable Rock 'N Roll Act cover band and playing musical parodies such as this one. One of his other projects is the "All of Us" precision medicine initiative to gather genetic data and other health information on more than 1 million people for researchers to use to answer questions about various diseases.

"We are very determined to make this a highly diverse million people, in terms of age, gender, geography, race, ethnicity, and socioeconomic status -- we want this to be the kind of view of the nation that will also teach us things about health disparities," Collins told MedPage Today during a 2018 interview.

Collins' tenure at NIH has not been without controversy. As the Washington Post noted in its story on Collins' resignation, an infection spread through the NIH Clinical Center in 2011 and killed six patients only 2 years after Collins began in his position. Collins eventually had to replace the leaders of the center after an assessment determined that they were valuing research more highly than patient safety. He was also criticized for potentially competing with drug companies after the NIH launched the National Center for Advancing Translational Sciences.

"This is not turning NIH into a drug development company; this is actually turning NIH into a more effective, innovative engine for assisting drug development, whether it's being done in academia or in the private sector, to be more successful," he told MedPage Today in a 2011 video interview. "And our supporters, both in universities and in companies, see this as a really good moment for this kind of thing to happen."

Members of the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community panned the NIH and the research community in general for not taking the disease seriously enough, but Collins disagreed. "It's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status -- something dramatic happened there," Collins said in 2018. The previous September, NIH had awarded $7 million in grants to three clinical centers and a data coordination center to continue ME/CFS research.

He added, however, that "there are problems [in that] CFS has become such a blurry diagnosis, that in there amongst hundreds of thousands or millions of people who carry that diagnosis is a whole heterogeneous group and there may be individuals ... who have something else entirely or even people who are suffering from depression and are therefore feeling fatigue for that [reason]. I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments."

After he steps down from the directorship, Collins "will continue to lead his research laboratory at the NHGRI, which is pursuing genomics, epigenomics, and single cell biology to understand the causes and means of prevention for type 2 diabetes," according to the NIH release. "His lab also seeks to develop new genetic therapies for the most dramatic form of premature aging, Hutchinson-Gilford Progeria Syndrome."

President Biden will need to nominate a replacement for Collins, who then must be confirmed by the Senate. In a statement, Biden called Collins "one of the most important scientists of our time."

"Millions of people will never know Dr. Collins saved their lives," Biden said. "Countless researchers will aspire to follow in his footsteps. And I will miss the counsel, expertise, and good humor of a brilliant mind and dear friend. We can never fully repay his wife Diane and their family for all that Dr. Collins has given to the nation, but we are happy for them and the next chapter they will write together."

Collins earned a BS in chemistry from the University of Virginia, a PhD in physical chemistry from Yale, and an MD degree from the University of North Carolina at Chapel Hill.

Joyce Frieden oversees MedPage Today’s Washington coverage, including stories about Congress, the White House, the Supreme Court, healthcare trade associations, and federal agencies. She has 35 years of experience covering health policy. Follow

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