• Issues pertaining to FDA review of application for rare disease therapies; Issues pertaining to interagency coordination and management of rare disease activities; Legislation to reauthorize the Pediatric Priority Review Voucher.
• FY 24 and FY 25 programmatic and report language pertaining to rare disease medical research, therapy development and public health activities.
• Accelerating Kids' Access to Care Act (H.R. 4758, S. 2372) and issues pertaining to out-of-state care; Impact of Inflation Reduction Act on rare disease therapies.

Duration: May 1, 2020 to present

General Issues: Health Issues, Budget/Appropriations, Medicare/Medicaid, Taxation/Internal Revenue Code

Spending: about $310,000 (But it's complicated. Here's why.)

It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.

Agencies lobbied since 2020: U.S. Senate, House of Representatives, Centers For Medicare and Medicaid Services (CMS)