Notes from Joe, Spring 2022

Notes from Joe

“If not us, who? If not now, when?” – John F. Kennedy
by Joe Pugliese, President and CEO

Nothing like the real threat of World War III to take one’s mind off the pandemic. We wish everyone the security of a peaceful world, which certainly a big ask. You have to be amazed and in awe of the mettle the Ukrainian people have shown. Our tepid response to date has never been shown to work in the past. The Ukrainians are pretty sure it is not working, now. I would have to agree with them.

It has been difficult to watch pregnant women, children and the elderly be terrorized by a relentless indiscriminate shelling and their lives are lost or forever changed by the most recent lawless, cowardly actions of Vladmir Putin and company.

Like it has done in the past, the Alliance has been looking for ways to assist during this disaster. We have turned to the World Federation of Hemophilia USA. They have created the WFH Solidarity Fund. The Alliance Board has made an initial donation to ensure they have the resources on hand to respond to requests from the national member organizations (NMOs) in the Ukraine, Poland, Germany and beyond at the situation continues to evolve. We will be staying in close contact with them over the coming weeks, months and most likely years.

Meanwhile, we are also trying to stay focused on the needs of the bleeding disorders community here at home. Click here to see a great article about Hemophilia of Georgia, who has been a driving force in the hemophilia community here in the US and around the world for years. Turns out they are also a great place to work, certainly a plus in a job market that makes attracting and retaining employees critical to fulfilling your mission.

Finally, we are coming up on the one-year anniversary of the production of DDAVP NS. It is a great milestone of when the community came together to address an urgent need for mild-moderate hemophilia A and type 1 Von Willebrand patients. It also means that the next lot produced will have 12 month dating from the date of manufacture. There remains a supply of product that will expire on 6/28/2022. All of this product is available through the DDAVP NS Challenge Program. We would not want to see any product go to waste. If you have questions about the Program, email me at

I will leave you with another JFK quote it is printed in our passports:

“Let every nation know, whether it wishes us well or ill, 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 the success of liberty.”

Also in this Issue…

Legal Update
· 340B Program Developments

Washington Update
· Recap of the Alliance Hill Day

Payer Update
· HANS Signs 6th Payer Contract!

Alliance Update
· Alliance Seeking Board Nominations
· Recap of the Linda Gammage Social Work Conference

Notes from the Community
· Hemophilia Alliance Foundation Awards 2022 Project/Patient Assistance Grants!
· World Federation of Hemophilia: Global Reach. Local Impact.

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