Notes from Joe, November 2022

Notes from Joe
  • Remembering Patricia Dominic
  • Trish DominicIt is with a heavy heart that I share that Patricia Dominic passed away on November 21, 2022. Trish leaves a legacy of innovation, compassion, and success that dramatically improved the lives of the bleeding disorder community around the world. Under her leadership, HoG was an innovative organization that was highly effective at fund raising, leading to significant support of numerous organizations and distribution of factor replacement therapy around the world through the World Hemophilia Foundation. Not content with simply enjoying the success she created at Hemophilia of Georgia (HoG), she was visionary and was one of the founders of the Hemophilia Alliance, the Hemophilia Alliance Group Purchasing Organization, and the American Thrombosis and Hemostasis Network (ATHN) and she funded the creation of The Alliance Pharmacy. The bleeding disorders community will continue to benefit from the many programs and organizations she helped to create. Thank you, Trish! You will be missed by so many. See here and here to learn more about Trish’s accomplishments.

  • Improving Care and Improving Resources
  • by Joe Pugliese, President and CEO

    Ironically, I had written the article below prior to learning about Trish. She was a fierce believer in supporting the gold standard of care and supporting this network, and I was honored to be able to work with her for so many years.

    It is very rewarding to hear the patient community respond positively to the efforts of the Alliance and its members. I think the merits of the national network of HTCs are obvious. As just one example, today we have a plethora of treatment options, with many more coming. These advancements are only possible because of the organized nature of our care, which was formed at the insistence of the patient community.

    As documented many times, the HTC network has raised the quality of life for the bleeding disorders community on a continuous basis. Continuous improvement leads to continuously higher expectations, which themselves lead to all of us always looking for ways to bring more improvements to the community. As a few examples, I have recently heard about a variety of ways to improve care, including stand-alone clinics for women with bleeding disorders and mental health services with staffing at local chapters.

    But we also have to recognize that improvements to care – or frankly, even maintaining the standard of care we have today – will be a challenge unless we can increase resources available to centers. All this when the new therapies on the horizon may put even more downward pressure on the funding stream available to support current services. I would suggest the best way to preserve the gains we have enjoyed and the progress that is still to come, is to focus on supporting our current network. This is our commitment at the Alliance to all of our members and the patients we serve. I encourage any of you with ideas about how to improve care and improve resources for centers to reach out to me. Remember: we work for you!

Also in this Issue…

Alliance Board Update
· Alliance Seeking Board Nominations

Alliance Update
· HTC Wall of Walkers 2022 Update
· Operations Update

Washington Update
· Update on the 2022 Midterm Elections

Payer Update
· Alternative Funding – an increasing concern

Notes from the Community
· Hemophilia Alliance Foundation: Announcing Project and Patient Assistance Grants!
· United States Hemophilia Treatment Center Network Launches Website

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