Notes from Joe, August 2021

Notes from Joe

Washington Update
by Joe Pugliese

I find myself again sitting down to write Notes from Joe in another tough week. The people in Haiti are dealing with another terrible natural disaster. The recent news out of Afghanistan is heartbreaking. The picture of people clinging to the sides of a jumbo jet as it is taxiing down the runway speaks volumes about desperation and fear. Our thoughts and prayers go out to all of them. We owe the people who allied with us much better than they have gotten to date. Our problems are so nonexistent by comparison.

Even closer to home, the dog days of summer have never been doggier. The days are hotter, the storms are bigger, the fires are bigger and of course the delta variant is ruining our back to normal. I think in a lot of ways last year at this time was easier (not to say it was easy!). There is an old saying that lack of options creates clarity of mind. Last year we had the luxury of limited options. We also had the benefit of looking forward to next year and putting all of 2020 behind us.

We were just warming up to having in person meetings, family vacations, not wearing masks and returning to the office. Now meeting planning is dicey at best. We are maintaining plans for a live new member meeting in November while keeping an eye on the delta variant. Despite the ongoing challenges and rising case rates, it is hard to complain when you see the suffering and death from around the world.

We have a long tradition in the United States of reaching out to help others. Recently the Alliance Board once again affirmed our commitment to the world bleeding disorders community with a grant to support the upcoming WFH Global Summit on Access to Care. See a note from Eric Solte, President of WFH USA with his thanks:

“Greetings Sean & Joe! In speaking with Jennifer recently, she alerted me to the generous support of the Hemophilia Alliance to the WFH Global Summit on Access to Care. I just wanted to add my personal thanks on behalf of the WFH USA and our global hemophilia community for your generous and strong support. Your partnership in such an initiative will help move our vision of Treatment for All forward in significant ways as people around the world in our grass roots become more competently skilled in advocating for the access to CFC’s that are so desperately needed. It also demonstrates the robust support of the partnership that we share. Please pass along my thanks to your Board. Take care.”

As many of you know, last year the Alliance funded the initiative to get the WFH Guidelines for the Management of Hemophilia translated into 6 languages. I had the pleasure of serving on the WFH USA Board, a role now being filled with distinction by my colleague, Sean Singh. Likewise, your Alliance continues to support the bleeding disorders community in the USA through the Hemophilia Alliance Foundation. Jeff Blake is now serving in the role of Alliance liaison and next month they will be announcing this year’s Innovation Award winners (formerly big grant). We are also providing financial support for the 2022 HTRS Trainee Workshops. All of this is in addition to the ongoing support we provide to ATHN, NHF, HFA, and disaster relief.

I know many of you are committed to helping through twinning programs and giving of your time and expertise. We would love to hear from you about ideas to support, maintain and improve patient care here and around the world. We hope you and your families, friends and colleagues are doing well in these difficult times.

Also in this Issue…

Legal Update
· Uniform Grants Guidance Procurement Standards: More Than Just Finding a Good Bargain

Washington Update
· Drug Pricing Update

Payer Update
· Working with the Payer Team and Hemophilia Alliance Network Services (HANS) a 2021 Case Study

Alliance Update
· Harmony in Hemophilia – HTC Wall of Walkers Unite Walk Challenge Update
· Update on New Member Meeting