Patient Advocacy Groups Lobby for Research Funding as ARPA-H Plans Take Shape

As President Joe Biden speaks about his vision for the Advanced Research Projects Agency for Health (ARPA-H), patient advocacy groups are scrambling to make sure their voices are heard and they have a chance to benefit from new research funding and high-profile attention.

Although ARPA-H will be housed under the National Institutes of Health (NIH), it will operate in a fundamentally different manner. Instead of relying on peer review, the new agency’s leadership will decide how to award funds, and project managers will have set terms rather than the indefinite tenures of NIH institute heads. Rather than awarding grants to university researchers, it’s likely that the agency will award contracts to biotech or pharmaceutical companies, imposing deadlines for what they should accomplish and when.

The White House and NIH have been gathering input through listening sessions with organizations representing various diseases. However, key figures in ARPA-H planning say much of the agency’s work might not be disease-specific, and instead could focus on board platforms or technologies to be used across medicine.

“It will be a marketplace of scientific ideas that everyone can play in,” said NIH director Francis Collins, MD, PhD. “But ultimately, the director of ARPA-H and those project managers will be responsible for deciding.”

Source: STAT, August 5, 2021.