Notes from Joe, September 2019

Notes from Joe

Celebrating 20 Years of the Alliance!
By Joe Pugliese

The fall meeting season seems to have started in August and is picking up steam. Our Member Meeting just concluded in Portland, Oregon last week. The meeting broke all attendance records, with 140 attendees who represented a diverse cross section of all parts of the hemophilia treatment center community. At the meeting, we celebrated the 20th anniversary of the creation of the Alliance. We were lucky enough to have the original seven founders of the Alliance (Trish Dominic, Bob Fox, Bruce King, Judy Primeaux, Derek Robertson, Bill Sparrow and Marisela Trujillo) join us for a delightful Monday night dinner. The evening featured music by White Rhino, whose leader, Kevin Finkle, is a young man with severe hemophilia A. The band was delightful and added just the right festive spirit to a fun evening.

The seven founders all spoke and took turns recalling how they came to the decision in 1999 that the HTCs needed a national member organization to represent the interests of all. They reminded everyone of the importance of having a not-for-profit organization that comprises federally funded hemophilia treatment centers (HTCs) that either have, or are seeking to have, pharmacy programs under Section 340B of the Public Health Service Act. The purpose of “the Alliance” is to promote the common interests of our member HTCs.

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. Nowhere was that more evident than when the Hemophilia Alliance board in a historic step voted to help support the “new independent Alaska Bleeding Disorders Clinic “ with an angel loan to help them get over the hump and help ensure people with bleeding disorders in Alaska have access to the comprehensive hemophilia care only available through our federally-supported network.

Inside this newsletter, you will hear from Judith Baker about the latest patient satisfaction survey, the results of which won’t surprise you. But I am always gratified to hear from patients about the important and high-quality services provided by HTCs. The Hemophilia Alliance team takes great pride and pleasure in being able to assist centers around the country and we are also delighted to be able to support other organizations. Towards that end we will once again supporting the HTRS Research Colloquium. We received this nice note from Wolfgang Bergmeier:

“I am one of the co-chairs of the upcoming HTRS Research Colloquium. In the name of the entire organizing committee, thank you so much to you and the Hemophilia Alliance for your generous support – amazing! Our goal is to make the HTRS colloquium free of charge for all trainees and your generous contributions is a huge step in this direction. The colloquium is a fantastic event for trainees where they can meet mentors, get their questions answered, and hear from senior investigators, NIH and industry on how to navigate career decisions. We would be excited if you and/or other members of your team could join us in Chicago.” We look forward to being in attendance and hope to see you there.

The Hemophilia Alliance was also recognized by the National Hemophilia Foundation as Red Tie Society member for our support of their nationwide advocacy program. Here is a photo of us receiving our award.

Finally – please remember that we all work for you!

Also in this Issue…

Alliance Update
· Alliance Seeking Board Member Nominations
· Portland Didn’t Disappoint
· Linda Gammage Social worker conference – Register for one of the spots

Legal Update
· Keeping and Getting Back What’s Yours

Washington Update

Payer Update
· 15 Key Points From Your Payer Team

Notes from the Community
· HTC Patients Highly Satisfied with HTC 340B Programs Nationwide


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@dc-crd.com 202-484-1100
Elizabeth Karan ekaran@feldsmantucker.com 202-466-8960
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@dc-crd.com 202-484-1100
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org
Karen Bowe
Joel Bellucci webmaster@hemoalliance.org 727-504-0491