• Issues related to reimbursement for hemophilia services and treatments in Medicare Issues related to reimbursement for hemophilia services and treatments in Medicaid Hemophilia Gene Therapy coverage and payment policy request for meeting with CMS HR 3561 Section related to Medicaid transparency and drug pricing Comments RE: Notice of Benefit and Payment Parameters for 2025 Proposed Rule (CMS-9895-P).
• Funding for federal hemophilia programs
• Affordable Care Act implementation Coverage of hemophilia treatments and services in private insurance plans, including alternative funding model Policies related to co-pay accumulators, including The HELP Copays Act (HR 830/S.1375) Private insurance policies that discriminate coverage for high cost drugs and use of patient assistance programs, also known as the (Alternative Payment Model) Letter to the Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)
• Issues related to participation in the 340B Drug Discount Program HR 3290, 340B Transparency bill Polices related to PBMs and drug cost transparency

Duration: July 1, 2022 to present

General Issues: Medicare/Medicaid, Budget/Appropriations, Insurance, Pharmacy

Spending: about $282,000 (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 2022: Centers For Medicare and Medicaid Services (CMS), U.S. Senate, House of Representatives, Health & Human Services - Dept of (HHS), Natl Institutes of Health (NIH), White House Office, Health Resources & Services Administration (HRSA), Food & Drug Administration (FDA), Federal Trade Commission (FTC)