Notes from Joe
Harmony in Hemophilia
by Joe Pugliese, President and CEO
When we started the group purchasing organization in 2005, we promised the community that we would invest in supporting them. This support has taken many forms. We provide funding to the ATHN data managers, NHF Advocacy, the USHTC network, Hemophilia Federation of America, Hemophilia Alliance Foundation, World Federation of Hemophilia, disaster relief and lobbying efforts on behalf of the bleeding disorders community.
Last year we broke new ground and funded the development of a DDAVP NS to meet a critical need for patients. We also co-funded the publication of Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders. Our lobbying efforts paid off with the introduction, passage, and implementation of the Hemophilia SNF Access Act, which will facilitate access to skilled nursing facilities for Medicare beneficiaries with bleeding disorders. In 2021, we were also national sponsors for NHF’s Unite Walk campaign. Karen Bowe, our Director of Community Relations, led a record setting effort by HTCs across the country in raising money for Chapters nationwide.
Also last year we signed a memorandum of understanding with the Hemophilia Federation of America. The memorandum outlines the importance of the HTCs’ gold standard of care. HFA committed to educate the community about how critical these centers are to the well-being of the patients in the bleeding disorders community. The effort is already paying dividends with this article having just been published in HFA’s Dateline Federation magazine. An excellent article, it highlights the history, challenges, and successes of the HTC network. Look for more information during the year.
While this is all well and good, there is much that remains to be done. The health care environment is quickly changing with new therapies that promise great advances yet represent challenges for how to fund the treatment center network to ensure access to care in the future. We created the HTC Growth Initiative for a subset of our members in the fall of 2021. The response has been tremendous, and we are looking at sharing the teachings from this series of workshops. You can expect to hear much more about what we have learned and programs to assist HTCs in meeting the challenges they face.
One program we had already developed was the New Member meeting. We have long heard that staff turnover is a significant challenge for HTCs across the country. We had scheduled a meeting for new HTC staff last year but had to cancel because of the pandemic. Earlier in February, we had an in-person meeting with 55 participants from across the country. I can safely say everyone had a wonderful time. It is hard to estimate what we have missed by not being in Real Life. The presentations from the Alliance staff and our manufacturing partners were informative and collegial. We want to thank Biomarin, CSL Behring and Sanofi for their support and participation.
Also in this Issue…
· Grants Management that Makes Sense
· Join us for the Alliance Hill Day!
· Request for Coverage of Desmopressin Acetate Nasal Spray (DDAVP)
· 1st Annual Hemophilia Alliance Pharmacist CE Conference