On March 23, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives that are relevant to the treatment and management of rare diseases under the law. This month’s program was focused on the process of federal appropriations, in which the federal government’s budget is decided.
Speakers for this program included:
- Ryan Shay, Faegre Drinker Consulting
- Steve Grossman, Alliance for a Stronger FDA
- Jay Nichols, March of Dimes
- Dylan Simon, EveryLife Foundation for Rare Diseases
- Jon Retzlaff, American Association for Cancer Research
Ryan highlighted that the ability to create government appropriations lies within the powers of the legislative branch and is specifically highlighted in the Constitution (‘the power of the purse’). There are multiple types of appropriations bills, such as supplemental appropriations and continuing resolutions, among others.
It’s a process that begins early in the year when Congress receives budgetary proposals requests from the president. Usually, the final appropriations bill is passed late in the year.
Both the House and Senate have their own appropriations committees, which tend to consist of more collaborative members of Congress with moderate political tendencies.
Steve notes that from the perspective of his organization, efforts to intervene in appropriations have been relatively successful, with the FDA seeing consistent budgetary increases in recent years. Biden’s proposal, for instance, calls for a 10% increase. Other interests relevant to the rare disease community include:
- Reigniting the ‘cancer moonshot;’ Biden’s proposal calls for $50 million. As many cancers are rare, rare diseases stand to benefit from the extra funding
- ACT for ALS program
Jay highlighted other priorities, such as improving childbirth survival rates for children and mothers, addressing the maternal mental health crisis, and supporting three programs: National Institute of Child Health and Human Development (NICHD), Newborn Screening Quality Assurance Program (NSQAP), and the Health Resources and Services Administration (HRSA)
Dylan presented the EveryLife Foundation’s Appropriations Request for FY24, which included:
- $30 million for the Orphan Products Grants Program
- Increased NCATS funding ($969.465 million)
- Commission of NAS study to determine the definition of ultra-rare diseases
To check out the full program, click here.
