• HCR - Health insurance access and treatment needs of persons living with cystic fibrosis related to Medicaid and the Affordable Care Act (P.L.111-148). Highlighting the patient voice during discussions about reforming policies impacting Prescription Benefit Managers (PBM). Supporting Funding for the National Institutes of Health (NIH) research and the Food and Drug Administration that benefits people with cystic fibrosis. Working to see enactment of the PASTEUR Act. Highlighting the importance of FDA policies on patients with rare diseases.
• Expanding access to Medicaid and Medicare and ensuring it supports individuals living with CF.

Duration: April 1, 2018 to present

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

Spending: about $810,000 (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 2018: U.S. Senate, House of Representatives, Health & Human Services - Dept of (HHS)