Highlights from Hemophilia Alliance Fall Member Meeting
by Joe Pugliese, President and CEO

Our recent member meeting was held in San Antonio, TX from October 8th to the 10th. The big news was the announcement that Jeff Blake will be stepping into the role of President and CEO effective January 1, 2024. Jeff will be leading an outstanding team of staff and consultants with over 300 years of experience in the bleeding disorders space.

It was fitting that my last member meeting as President and CEO of the Alliance was in San Antonio, the same location, where in 2008, I began my term. Prior to the 2008 meeting, there were two organizations with two separate boards that functioned as the Alliance – the Hemophilia Alliance, a 501(c)6,member organization and the Hemophilia Alliance Group Purchasing Organization, a 501(c)3, group purchasing organization (GPO). At the 2008 meeting, the two organizations merged. The Hemophilia Alliance became a 501(c)3 organization filling both the GPO and membership organization roles (More on this story in my last Notes from Joe in December).

The Fall Meeting was outstanding. Sean and his team did their usual great job. The meeting participants appeared to truly enjoy being together and sharing ideas on how to improve their operations, always with the focus on improving patient outcomes. Thanks go to the excellent presenters, whose slides are available in the members section of the Alliance website.

I want to take note of two highlights from the meeting. The first was not even a presentation but Eric Gray, the Alliance Board Chair, asked all the meeting attendees to recite the organization’s mission statement inserted here. It was a remarkably powerful way to bring our work into focus.

The Hemophilia Alliance works to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.

The second highlight for me and the meeting attendees was a presentation by Jamison Buxton CEO and Andrea Miller, APNP of Hemophilia Outreach Center (HOC) – Green Bay, WI, who presented on their center’s experience providing gene therapy to two patients. HOC was the first center in the US to infuse a commercial gene therapy product outside a clinical trial. What made the presentation so special was the obvious attention to every detail, the thoughtfulness, obvious compassion, and commitment to doing it right.

I am also pleased to report that the Alliance, along with NBDF, HFA and Coalition for Hemophilia B continue to work together to further the ability of HTCs to serve the bleeding disorder community. We recently sent letters to the state Medicaid offices in Florida and Arizona seeking the inclusion of HTCS in network for both clinical and pharmacy services under Medicaid, rather than their existing exclusive relationship with a single PBM. We plan on sending similar letters to other public and private payers.

I think the secret superpower of the USHTCN is their passion and dedication for doing the right thing for their patients. I know it is what has made my work in this community for the last 45 years so enjoyable.