Notes from Joe
Back to the Future
By Joe Pugliese
My September article talked about the seven founders whose vision created the Hemophilia Alliance. The Alliance was originally created as a 501(c)(6) trade organization in 1999. The concept as mentioned before was to pool the resources of centers around the country for the good of all the centers. The early organization did great work. The 340B Program was only seven years old. Recombinant factor products had just been introduced in the mid-90s.
The founders did a great job of identifying the opportunity this program created for all treatment centers. They also quickly identified a significant limitation to this type of organizational structure: FUNDING. Trade organizations are required to generate most of their revenue through membership dues. Members generally like lower dues versus higher, just like they generally like more services versus fewer.
The second thing they recognized was there was a significant opportunity to assist HTCs across the country by forming a group purchasing organization (GPO). The GPO was formed in 2005 as an independent 501(c)(3) organization. It launched (probably a strong word) January 1, 2006. The newly formed GPO had a board of seven and no participating members. The first HTC to formally become a participating member if the Alliance was the University of Pennsylvania. This center was quickly joined by CHLA, IHTC, HoG, Stanford, Western PA and 14 other centers. We sent out a request for proposals to all manufacturers in the middle of 2006. We got back thanks but no thanks from every manufacturer. The silver lining was we had it in writing from everyone that they had declined the opportunity. It was not until the middle of 2007 that we got our first contract of note. I always thank CSL Behring for making the Alliance possible, without their contract the Alliance as you know it today would simply not exist.
As it turned out, a 501(c)(3) cannot give money to a 501(c)(6), so in the spring of 2008 the boards of the Hemophilia Alliance and the GPO voted to merge the two organizations, dissolve the original 501(c)(6) and do business as the Hemophilia Alliance.
You will read inside about the announcement of the 2020 grant cycle for the Hemophilia Alliance Foundation. You will also read an update about the ATHN. I’m so pleased that we have been funding data managers through ATHN in support of HTC efforts for the last nine years. We provide significant support for patient advocacy. We have grown from Joe and Sean to a team of 13 employees and consultants and we will be adding additional capabilities in 2020 all in support of our member HTCs and in reality all of the HTCs across the country.
Last month, I talked about how transformative all the new therapies will be to our little community. When I started in this community in 1977, virtually all of the factor replacement products were dispensed out of HTCs across the country. As you think about the coming gene therapy products and the need for ongoing clinical care, I see us going back to the future if we want to maintain a vibrant and capable comprehensive hemophilia treatment center network.
Also in this Issue…
· Patient Data: Who Owns It, How Do You Use It, and Why Should You Care?
· Supporting Patients while Steering Clear of Fraud
Notes from the Community
· Update from the Hemophilia Alliance Foundation
· Alliance Operations Update
· 2020 Meeting Schedule
Team Alliance Contact Information
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