Notes from Joe, May/June 2022

Notes from Joe

Hang in There
by Joe Pugliese, President and CEO

“We are delighted to announce that the Alliance Board voted to fund the WFH International Hemophilia Training Centre (IHTC) Fellowship Program for up to $100,000. IHTC is the driving force for establishing comprehensive, multidisciplinary care for bleeding disorders in countries with inadequate access. We have seen its impact over a number of years – an impact that is transformational for the fellows and for their communities, as well as for the staff of the centers that provide the training. Healthcare providers like Dr. Tessa Nwagha from Nigeria, who you met during the recent webinar, leave the program inspired and motivated to not only take better care of their patients, but to advocate for greater government investment in hemophilia care. She says what she learned and experienced at Chapel Hill is what motivated her to serve as Medical Advisor to the Hemophilia Foundation of Nigeria and to support their efforts to secure a government commitment to fund prophylaxis in children under the age of five. “ Jennifer Laliberté, WFH

The board voted to fund this important program on May 26th, which was the same day Dolores Singh, passed away. We felt it was appropriate to make the donation in her memory, since her son, Sean, has been a driving force for helping the Alliance achieve its mission to support members in delivering care to the bleeding disorder community here in the United States and to assist in training health care providers around the world.

We have every other week team calls with all Alliance employees and consultants. During the last call, Ellen Riker suggested that boring would be nice, a sentiment I am sure that is widely shared. I am equally sure we can forget about boring anytime soon. The war in Ukraine continues – with many policymakers here and abroad pleased with the pleased with the progression of the Ukraine war. If this is success, I hate to see what a failure looks like. We unfortunately do not have to go elsewhere to see senseless violence, whether it is in Uvalde, Buffalo, Waukesha, or the subways in New York. Our prayers go out to the victims, families, and all of us as we try to cope with a seemingly unprecedented avalanche of news that goes from bad to worse.

I draw strength from two things. One, our parents and grandparents lived through two world wars, at least one pandemic and the great depression. (For the youngsters in the audience great grandparents) They lived through all of that and built a thriving nation that has made the whole world safer, healthier, and wealthier than it would be without them. Two, I look to my family, friends, and colleagues. Karen and I have been together for 48 years. Our children and grandchildren help keep us centered. The line between my friends and my colleagues is often blurred, which is one of the benefits of being in this space for a long time. I recently read a book Mountains beyond Mountains, about Paul Farmer, MD. I think I can safely say he was a remarkable individual. Chris Roberson from IHTC sent me a copy of the book. It has been out for a couple of decades, not sure how I missed it. If you have not already read it, I strongly recommend you do.

I recently attended the HFA, WFH and the Alliance growth initiative meetings. They all remind me of all the everyday heroes and good people that I have had the pleasure of working with for the last forty plus years. The national and international news is bleak, but at the personal level I see many dedicated people from all parts of the community in the US and around the world uniquely focused on making the world a better place. There has never been a better time to focus on the positive: in our community, the treatments have never been better and the desire to improve outcomes for everyone in the bleeding disorders community has never been stronger or more effective.

Focusing on the good things that are happening everyday might qualify as boring but boring can be very good.

Also in this Issue…

Alliance Board Update
· New Board Members

Alliance Update
· Harmony in Hemophilia
· HTC Growth Initiative

Legal Update
· HTCs and Chapters: Partners in Education and Outreach

Washington Update
· Alliance Advocacy Update

Payer Update

Notes from the Community
· Reminder: Announcing the Hemophilia Alliance Foundation 3rd Annual Innovation Grant

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