Alliance Advocacy Update
by Johanna Gray, Advocacy Consultant

The Alliance advocates throughout the year on behalf of HTCs and their patients, and I’m pleased to share two recent comment letters that we have done as an example. Policymakers in Washington and in states across the country have been focused on pharmacy benefit managers (PBMs) and their practices that impede access to care and raise costs for individuals, employers, and payers. Of course, this is not a new story for us – for years, people with bleeding disorders have been forced to switch products due to narrow formularies and HTCs have been cut out of networks in favor of a specialty pharmacy owned by the PBM. As a result, the Alliance was glad to submit two recent letters on the topic:

• The first is a letter in response to a Federal Trade Commission request for information about PBMs. The FTC is gathering information on a variety of anti-competitive practices to inform their work and the Alliance submitted a detailed letter outlining all the ways that these practices harm our community.
• The second is a thank you letter to the Governor of Vermont, who recently signed into law a state bill to restrict PBM activities. He was encouraged to veto the legislation by some of our colleagues in the PBM world and we thought it was important to thank him for enacting the legislation and highlight HTCs serving patients in the state.

These are just two examples of Alliance activities on behalf of our members. We are also still working on implementation of the Hemophilia SNF Access Act, fighting copay accumulator adjustment programs, keeping an eye on all drug pricing and potential 340B reform actions, and developing a strategy to prohibit the new alternative funding mechanism, among other issues. Please contact me with any questions or if you have other ideas for how the Alliance can advocate to support your center.