Hemophilia Alliance Hill Day Focuses on 340B and Alternative Funding Programs
by Ellen Riker and Johanna Gray, Artemis Policy Group

With the goal of educating Members of Congress on the importance of the 340B Drug Discount Program to Hemophilia Treatment Centers (HTCs) and the bleeding disorders community, 120 advocates headed to Capitol Hill representing various members of the multi-disciplinary HTC team and their patients on April 18, 2024. In addition, we shared issues related to Alternative Funding Programs, being faced by some patients that are insured by large, self-insured employers. The participants in Hill Day found staff and Members visited to be very interested in what we had to say and willing to be supportive.

In visits advocates made the point that we needed Congress to support maintaining HTCs’ ability to participate in the 340B Program, so that centers can continue to serve patients, who benefit from access to lower-cost drugs and the medical, dental, physical therapy, and social services-based support and education that HTCs provide. We also shared our concerns regarding the spread of alternative funding programs (AFPs) that harm patients, payers, and taxpayers. Specifically, we sought support measures to ensure that insurance plans cannot exclude coverage for high-cost medications for the sole purpose of redirecting validly insured patients to manufacturer patient assistance funds. Insurers must also be required to consider medical necessity appeals for drugs not covered.

We want to share with all members of the Hemophilia Alliance the Fact Sheets and Talking Points that were used for Hill Day. Since all Representatives and over a third of the Senate are up for reelection this November, HTCs should consider meeting with Members of Congress and staff over the summer when they will be spending more time at home. Requesting a meeting in the district office is not difficult and even talking to someone on the phone is an opportunity to tell our unique story. The Fact Sheets are handouts for these visits and the talking points can be used as a script for your meetings.

Please contact Johanna Gray (jgray@artemispolicygroup.com) or Ellen Riker (eriker@artemispolicygroup.com) if you need assistance in contacting the legislators that serve your district and state.