Notes from Joe, December 2022

Notes from Joe

Looking Back on 2022
by Joe Pugliese, President and CEO

Writing this at the end of 2022, on one hand it seems like the COVID situation is over, but maybe not, regardless it is clear that people here and around the world have had it with their leaders trying to impose controls on their life. We are back to a full slate of meetings everyone is genuinely excited to meet in person. Personally, I mask up in airports, planes and trains. I have been vaxed, boosted and boosted plus. Naturally I also got covid, but the good kind, felt bad but not too bad, got better.

The Alliance had another good year thanks to the ongoing support of our members, the patient community and our manufacturing partners. We continue to expand the services and support we provide the community. As always, it is with an eye on maintaining and expanding the quality and access to care. We now have just over a year of providing DDAVP NS to the community. It is so rewarding to hear from patients who rely on this product to help them have a better quality of life. We continue to talk to the FDA about path forward to attain an ANDA (abbreviated new drug application). The goal is resolving the ongoing reimbursement challenges, which of course limit access to care. It would also make it possible to export the product to meet unmet needs around the world.

Earlier this year we had the opportunity to be the primary sponsor of the inaugural Partner’s Physician Academy. “The Academy sought to address the training gap existing for most physicians upon completion of a hematology-oncology fellowship. Physicians are simply not adequately prepared to embark on a career at an HTC. The Academy also aimed to provide participants with an unparalleled opportunity to network with some of the key opinion leaders in the HTC network.” Said Chris Roberson. Looking to 2023 and beyond the Hemophilia Alliance will be the exclusive primary sponsor and The Alliance Pharmacy will be the exclusive supporting sponsor of the Physician Academy per an MOU signed this month.

The Alliance Board also approved expanded financial support for the National Hemophilia Foundation. We presently fund Partners in Progress (PIP) which supported Advocacy, Community Education and Chapter Services (including this Chapter Leadership Summit). and the Red Tie Society (which is unrestricted membership money) is used to offset unfunded or partially funded programs that included Research, Walks, and Awareness designed to raise the visibility of bleeding disorders across the country and create a voice for the community within our partnership. We will also be providing funding to ensure there are in person MASAC meetings and money for health care providers to attend the annual Bleeding Disorders Conference.

The year of course started with the most brazen and sustained act of terrorism since World War II. The Ukrainians are being forced to live in constant fear of missile and drone attacks and without basic necessities like food, water and heat. The year is ending with the good citizens of Iran and China saying enough is enough. All I want for Christmas is for them to get the opportunity to live with the freedom and safety we take for granted and enjoy here.

Merry Christmas and Happy New Year!

“Let every nation know whether it wishes us well or evil that we shall pay any price, bear any burden, meet any hardship, support any friend, oppose any foe in order to assure the survival and success of liberty.” – JFK

Also in this Issue…

Alliance Board Update
· Welcome New Alliance Board Members!

Alliance Update
· Save the Date for Alliance Meetings for 2023!
· HTC Wall of Walkers 2022 Update
· Flashback to the Fall HTC Member Meeting in October

Legal Update
· Alliance Legal Activities Recap

Washington Update
· 2022 Wrap Up

Payer Update
· Recap of Payer Activity

Notes from the Community
· Hemophilia Alliance Foundation: Announcing Project and Patient Assistance Grants!

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