by Joe Pugliese, President and CEO

As announced here in June, the Hemophilia Alliance has been actively searching for a new President & CEO to lead the organization starting January 1, 2024. The Executive Committee of the Board and I are serving as the search committee. We received almost 400 applications for the position.

The Alliance engaged BDO, a global accounting and human resources firm, to assist in the search and to assist with developing the job description and metrics to evaluate the candidates. The search committee held interviews at the BDC conference. We anticipate making the announcement of who will be the next Alliance President in the next several weeks.

I want to thank my fellow search committee members Eric Gray, Becky Burns, Steve Powell, and Dean Hindenlang. We worked together remarkably well. I would also like to thank the 400 people who applied. There were many amazingly talented people in the mix, who had demonstrated years of outstanding success in their fields. The finalists for the position are not only talented, but all have years of experience with the blood disorders community.

In other news, I am pleased to report that the three national bleeding disorders patient organizations – NBDF, HFA, and the Coalition for Hemophilia B – recently came together with an incredibly well written letter of support for bringing gene therapy to the community through the federally supported network of hemophilia treatment centers – the Gold Standard for care. Our community feels blessed with increasingly more effective products, which help produce better outcomes but to date do not offer a cure. Patients needing HTC clinical care continues to grow, including patients with mild and moderate disease and women who are symptomatic carriers. It is why I remind myself not to use the misleading phrase “federally funded network of centers,” since the average annual grant per center is a very modest $30,000 per year, not enough to pay the rent and keep the lights on. The cost to maintain and expand the center’s ability to provide clinical care is directly related to their ability to fund themselves.

Also, I read a very interesting article in the Wall Street Journal on September 11^th Generic Drugs Should Be Cheap, but Insurers Are Charging Thousands of Dollars for Them. Shockingly it was reported that horizontally integrated companies that own the insurer and the PBM charge upwards of 100 times the actual cost of the product. Over ten years ago, the Alliance leadership visited the FTC (Federal Trade Commission) and told them this is exactly what would happen. I wish I could claim some sort of brilliance. It is true I seldom miss the readily apparent.

CVS Health has long had sole source agreements with Florida and Arizona Medicaid, depriving the HTCs in those states the opportunity to serve their patients by dispensing treatments purchased using the 340B discount and to accrue any program income to invest back into clinical care. You have to wonder why a state Medicaid office or other insurer or employer (private insurance, self-funded plans, the Defense Department’s Tricare program) would sign an exclusive pharmacy agreement with one of these companies, but more often than not that is exactly what happens. Tricare is part of the federal government, and you would think as a matter of policy they would use federally supported health care centers. In the 17 years that I have worked with the hemophilia community Tricare has used a national for-profit commercial pharmacy exclusively.

As noted in the WSJ article, patients are being overcharged and many tell me that the service is not great. Things you would expect when there is no competition. Patients should demand to have the option to support the HTC network by getting their treatments from the HTC integrated pharmacy.

by Joe Pugliese, President and CEO

Amy Shapiro MD, Co-founding Medical Director of the Indianna Hemophilia and Thrombosis Center (IHTC), and a Partners Physician Academy Advisory Board Member, kicked off the 2nd Annual Partners Physician Academy. The Academy hosted 18 participants, who are fellows and junior faculty committed to classical hematology serving at HTCs in the US. The program is designed to give these ambitious young hematologists an exhaustive update on clinical and research efforts in the field, with a focus on the patient-centric care provided by the multidisciplinary team at an HTC. Importantly, the Physician Academy gives attendees the opportunity to network with a cross section of key bleeding disorders’ opinion leaders in the US.

There has been much discussion regarding the current physician leadership in the HTC community as they near retirement, and the lack of classical hematologists entering the field to replace them. The Partners Physician Academy represents a pragmatic solution to address this challenge by offering attendees an unprecedented opportunity to be mentored by some of the most recognized names in the bleeding disorders space.

The Hemophilia Alliance and The Alliance Pharmacy are delighted to cosponsor this critically important event with Partners and IHTC to make this event possible. As noted by Dr. Shapiro, “This wonderful program simply would not be possible without the generous support of the Hemophilia Alliance and The Alliance Pharmacy.”