Notes from Joe, December 2019

Notes from Joe

2019 Recap
By Joe Pugliese

Year end is the perfect time to stop and reflect on all the good fortune and the good things you have accomplished in the year soon to end. January will be soon enough to think about everything yet to accomplish; in fact, early in 2020 the Alliance board gets together to review the progress we had in 2019 and make sure our priorities for 2020 and beyond reflect our best thinking about what we need to do next. We invite each of you weigh in on what we should be doing next. It is fun to think about how you would like to shape the future in our little world. As mentioned here and everywhere, the pace of change and innovation has never been more dramatic. We will share our vision of what that world should look like, in January and throughout 2020.

To recap the year by the numbers:

  1. For the first time ever the Alliance is providing direct financial support for a startup HTC. The no interest loan is allowing the Alaska Bleeding Disorders Center ensure that people the bleeding disorders community in Alaska have a federally-supported hemophilia treatment center.
  2. We had 9 new participating members in 2019, which is particularly remarkable when you consider the constantly dwindling number of centers eligible. We now have 105 participating members out a possible pool of 112 HTCs who have factor programs. Our goal of course is to have all federally-supported centers be participating members of the Alliance and to assist the 25 centers without a factor program to start one.
  3. We celebrated 20 years of Hemophilia Alliance by inviting the 7 founding centers to our Fall Member meeting in Portland, Oregon. The fall meeting set a record for attendance with 140 participants.
  4. Some numbers: The final numbers are not in, but I think it is safe to say members saved around $100,000,000 on purchases again in 2019. Plus, our support for the community since 2009 has topped $16,000,000. I promise to work to grow both numbers in 2020.
  5. The Alliance Pharmacy (TAP) celebrated 10 years of supporting the HTCs and the community. Like the Alliance, TAP has a long history of giving back to the community. TAP was created specifically to support HTCs and the bleeding disorders community across the country. Since 2012, TAP has donated in excess of $1,000,000 back to the community. I have been able to confirm that TAP has provided more financial support to ATHN than all the big specialty pharmacies, PBMs and drug distributors in the country combined.
  6. TAP along with the Center for Inherited Bleeding Disorders (CIBD) are the exclusive distributors of record for the Alliance GPO contracts with Aptevo, Genentech, Kedrion, and Octapharma. Your support of our in-house distribution model saves you money and allows TAP to reinvest in the community. It also supports our efforts to contract on your behalf through the Hemophilia Alliance Network Services (HANS).
  7. We had 10 applicants for a single board position on the Alliance board. The applicants were uniformly outstanding and came from all corners of the treatment center community, including physicians, nurses, pharmacists, administrators, and social workers. We cannot thank everyone enough for offering their time and expertise to make Alliance an even better member organization. The bad thing about this is we could not say yes to all of them. We are delighted to have Regina Butler join us.
  8. We have three new board members on The Alliance Pharmacy Board: Amit Soni MD, John Myers RPh and Jeff Blake. We are seeking one additional board member for the pharmacy. If you are interested, please contact the head of the nominations committee, Stephanie Gustafson, RPh at
  9. The Hemophilia Alliance Foundation, chaired by Susan Karp, added several new board members in 2019, including Donnie Akers, Grant Huira, Maria Manahan, and Amy Marquez. The 2020 grant guidance was posted on the Foundation website on December 5th. Applications are due back not later than January 31st, 2020. There will be a record amount of grant money available in 2020.
  10. Looking ahead to 2020, The Alliance Board has approved us to add an additional team member who will give us the ability to help members with billing and enhance our payer marketing efforts. This position will be located in the Tampa, FL area. Initially this support will be directly related to our HANS and PPO initiatives and like all Alliance services (GPO, Operations, Advocacy, Legal, and Payer Contracting) will be available at no additional cost, beyond your very modest annual membership dues. A job description is available here.

Merry Christmas and Happy New Year! May 2020 be a happy and healthy year for all of you.

PS. Reminder: The 2020 340B Program HRSA Grantee Recertification Period Begins in January. See later in the newsletter for the note from HRSA with details about the 2020 recertification process.

Also in this Issue…

Payer Update

Washington Update

Legal Update
· Legal Team Update – New Contact Information
· Foundations for Grant Compliance: Rules Exist Even When Ignored

Notes from the Community
· Emergency Guides Available

Alliance Update
· Reminder: 2020 340B Program HRSA Grantee Recertification Period Begins in January
· Operations Update
· 2020 Meeting Schedule