On December 16, NAEVR submitted comments on the 21st Century Cures Act 2.0 (H.R. 6000), introduced by House Energy & Commerce Committee members Diana DeGette (D-CO) and Fred Upton (R-MI), that would update the initial legislation passed in December 2016 for which NAEVR advocated passage. NAEVR’s comments follow those submitted on July 13, 2021, on a discussion draft where the Alliance focused its initial comments on authorization of the Advanced Research Projects Agency-Health (ARPA-H)—which President Biden proposed in the Fiscal Year (FY) 2022 budget—and the draft’s inclusion of the Research Investment to Spark the Economy (RISE) Act, which would provide $25 billion for “research relief” to federal research agencies, including $10 billion to the National Institutes of Health (NIH).
In its December 16 comments, NAEVR focused on the bill’s “Research” section, which includes details on ARPA-H’s organization and structure, as well as inclusion of the RISE Act.
NAEVR acknowledged a set of “guiding principles” that the White House Office of Science and Technology Policy (OSTP) and the NIH developed from consensus comments by participants in a series of Listening Sessions held through the summer and which were summarized in an October 20 Listening Session. These included:
- Centering ARPA-H around technologies rather than specific diseases, such that it can be applied to solve disease-specific problems, and complementing NIH’s research portfolio, not duplicating it.
- Using data sharing platforms and universal data standards and systems
- Engaging the stakeholder community
- Embracing equity and diversity as a cornerstone of ARPA-H’s mission (from diversity in staffing to developing technologies that recognize health differences and disparities).
With respect to these principles NAEVR stated, “Although much of the bill’s language regarding
ARPA-H deals with its organization and structure, NAEVR encourages legislative staff to ‘crosswalk’ how that language ultimately ensures implementation of the guiding principles so that ARPA-H fully meets its anticipated mission.”
NAEVR also commented on another area of consensus in the OSTP/NIH Listening Sessions—that investment in ARPA-H should supplement, not supplant, funding for NIH’s base, including Institutes and Centers (I/C) funding, NAEVR reiterated that the National Eye Institute’s (NEI) purchasing power in FY2021 is less than that in FY2012. NAEVR made this same point in May 19 testimony at the House Labor, Health and Human Services, and Education (LHHS) Appropriations Subcommittee’s Public Witness Day hearing and in June 17 written testimony to the Senate LHHS Appropriations Subcommittee.
NAEVR again expressed appreciation for inclusion of the RISE Act in the legislation noting that,
“although Congress has passed legislation that focuses on pandemic-related research and public health issues in addition to economic recovery, the recent Infrastructure Investment and Jobs Act (H.R. 3684) and the still-developing Build Back Better legislation do not address research recovery.”
