Notes from Joe, December 2021

Notes from Joe

Looking Back, Planning Ahead
by Joe Pugliese, President and CEO

2021 did not live up to the hype! It was all supposed to be better, starting with the pandemic. Oddly in some ways progress on the pandemic was the highlight of the year. We are blessed in the US with three highly effective vaccines. It is clear that year two of the pandemic has taken a significant toll on everyone but healthcare workers in particular. It is a real tribute to the dedication and resilience of the HTC staffs across the country to stay focused on providing outstanding patient care.

Several in person / virtual meetings got off the ground and hopefully, current, and future variants will be effectively managed through the use of vaccines and some promising treatments. The Alliance is moving ahead with plans for several in person meetings, our annual strategic planning board meeting, our first ever pharmacists CE and our first ever new member meeting all in the first 6 weeks of the New Year. Everyone is clearly tired of virtual meetings. I am hoping we will be tired of in person meetings by mid-year.

Our manufacturing partners have done a marvelous job maintaining an uninterrupted supply of life -saving products for the bleeding disorders community. Many thanks to all of them; they have obviously invested in protecting their supply chains. It helps that they do not use cargo ships.

The Hemophilia Alliance had another very productive year. Our manufacturing partners continue to support our vision of a financially stable, integrated, national network of hemophilia patient care. We were delighted to participate in an effort headed up by Len Valentino MD and CEO of NHF once again confirming the critical importance of this network.

The SNF (skilled nursing facility) legislation that was enacted in 2020 went into effect 10/1/2021. Seemingly getting the legislation passed is the easy part! The Alliance advocacy, legal and payer teams have been hard at work making sure the implementation goes smoothly. The Alliance payer group has also continued to enjoy great success in identifying single case agreements as well as HANS (Hemophilia Alliance Network services) contracts.

The operations team ran a very complicated and busy year of in house and manufacturer webinars and managed the increasingly complicated finances of a growing organization that continues to deliver tremendous value to its members and the larger bleeding disorders community. We also set yet another record for investing back into the community.

Finally, we were able to bring DDAVP NS back to the community in 2021 by working with STAQ Pharma, Inc. The first vials shipped in September. The product was made possible by the Alliance funding the development costs to bring this product to market. The patient organizations put their weight behind the effort to clear regulatory hurdles and we are well on our way to have the product available to all patients in the US. Additionally with the help and support of Robert Klassen, MD, and Alex Wong, RPh, the product should be available in Canada under a special product access program in the near future.

Looking ahead, we have a short list of items to work on in 2022. This is not the full list, of course, but it should keep us busy!

  1. Protecting program income and adherence to the grant rules
  2. Addressing alternative funding challenges
  3. Expanding the clinical footprint for our members
  4. Support the proposed legislation protecting 340B
  5. Gene Therapy preparedness, including single case agreements and contract RX
  6. Sustainability of HTC for years to come
  7. HTC Growth Initiative leading to more member engagement
  8. Addressing accumulator adjustor programs

We wish you all a Happy and Healthy Holiday season and hope to see many of you in person next year!

Also in this Issue…

Legal Update
· Not the Old, Not the New, but the Necessary: Legal Review of 2021

Washington Update
· Year in Review

Payer Update
· Payer Team Update

Alliance Board Update
· Update on New and Departing Alliance Board Members

Alliance Update
· Operations Team Update
· 2022 Spring Alliance Members Meeting Schedule

Notes from the Community
· Hemophilia Alliance Foundation Announces 2022 Project/Patient Assistance Grant