• Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Sickle Cell Disease Treatment Centers Act (not yet introduced) Policies related to the social security disability programs, including letter to SSA seeking the review of the the disability criteria for sickle cell disease
• Engagement with the Center for Medicare and Medicaid Innovation on the Cell & Gene Therapy Access Model Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) Sickle Cell Disease Comprehensive Care Act (H.R. 7432) CMSs Office of Minority Health Sickle Cell Disease Action Plan
• Policies related to the orphan drug provision in the Inflation Reduction Act Comments Re: [FDA-2023-N-4718] Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement
• Funding for federal sickle cell disease programs FY25 House and Senate Labor-HHS Appropriations bills

Duration: July 1, 2023 to present

General Issues: Health Issues, Medicare/Medicaid, Pharmacy, Budget/Appropriations, Medical/Disease Research/Clinical Labs

Spending: about $60,000 (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 2023: U.S. Senate, House of Representatives, Health & Human Services - Dept of (HHS), Social Security Administration (SSA), Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA)