President Biden has called for the creation of a new $6.5 billion research institute, the Advanced Research Projects Agency for Health (ARPA-H), to speed innovation and lead to cures for critical diseases.
If created, ARPA-H could benefit the inherited bleeding disorders community both directly – through projects specifically targeted at our community – or indirectly, such as through research that accelerates development of gene therapies or improves drug development and delivery more generally.
In a recent commentary published in Science, NIH Director Dr. Francis Collins and White House Office of Science and Technology Policy Director Dr. Eric Lander described ARPA-H as combining the health expertise of the NIH with the culture and speed of the Defense Advanced Research Projects Agency (DARPA) to tackle time-limited projects to revolutionize how diseases are prevented, treated and ultimately cured. For the past 60 years, DARPA has taken on high-risk projects without being worried about failure, which have led to some amazing advances, including the creation of the internet. ARPA-H would follow the same model to address bold, high-risk problems and remove barriers to transform health and medicine, so patients receive better treatments and cures more equitably and quickly than today.
While the proposal was included in President Biden’s budget for Fiscal Year 2022, Congress will ultimately decide whether and where ARPA-H would be created, as well as at what funding level. A bipartisan group of Congressional leaders has expressed support for the proposal and there has been discussion of creating ARPA-H both via the regular appropriations process, as well as through stand-alone legislation. NHF is closely monitoring all of this activity and will continue its advocacy in support of clinical research that benefits the bleeding disorders community.
Source: National Hemophilia Foundation