Notes from Joe, October 2019

The Times They Are a-changin . . .
By Joe Pugliese

We recently reprinted the bleeding disorders product catalog which has been distributed widely to treatment centers and chapters across the country. We have gotten some nice compliments on how the catalog is laid out and received some excellent feedback on how to improve it by being more consistent in referencing different products. I bring this up because we have additional copies of the catalog which we would like to get rid of before it becomes obsolete – please contact me if you would like more.

The product catalog will be obsolete soon enough because If I’m counting correctly, there are approximately 27 new products in the pipeline, including: 6 hemophilia A gene therapy products, 7 hemophilia B gene therapy products, 3 tissue factor pathway inhibitor (TFPI) products, 1 RNA interference product, 3 protein C or S inhibitor product, 2 subcutaneous, 2 additional EHL RFVIII, 1 implantable matrix, 1 EHL RFVIII which will start shipping in early 2020 and potentially a FVIIa which maybe here next year as well. There may be even more that I’m missing.

It is hard to really appreciate how remarkable the breadth, depth and speed of these developments are coming to our little community. The changes are transformative and of course, these improvements are as welcome as they are overwhelming. The decision tree for how to decide the most appropriate therapy for each patient is and will becoming even more daunting. The ATHN DATA Summit featured 15 posters all focused on assuring and/or documenting that the best outcomes for patients are found at federally-supported comprehensive hemophilia treatment centers, sometimes known as bleeding and thrombosis centers. There are also presently 10 active research studies being conducted by the HTC network to determine how to further improve outcomes for patients.

Ironically all of these advancements could seriously undermine the comprehensive care model that has made them possible. The comprehensive care model aggregated patients for clinical trials and focused the unique clinical talents of dedicated healthcare professionals. These new therapies will require the ongoing clinical care team that have made all of this possible, while changing the economics of how centers are able to fund this clinical care.

The Alliance is hard at work to understand the impact of these new treatments on HTCs and is working to develop reimbursement models that will support and strengthen the HTC network. As you know, 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. Our mission – and yours – remains the same even with these advancements.

Also in this Issue…

Alliance Update
· Our Library Has a Little of Everything
· Alliance Seeking Board Nominations

Payer Update
· Know Your Patients and Their Insurance

Notes from the Community
· NHF’s Bleeding Disorders Conference Brings the Community Together
· HTRS Announces Second Research Colloquium
· Update from the Hemophilia Alliance Foundation


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@artemispolicygroup.com 703-304-8111
Elizabeth Karan ekaran@feldsmantucker.com 612-202-3240
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@artemispolicygroup.com 202-257-6670
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org 727-688-2568
Karen Bowe karen@hemoalliance.org 717-571-0266
Joel Bellucci webmaster@hemoalliance.org 727-504-0491