Washington Update, Spring 2022

Washington Update

Recap of the Alliance Hill Day!
by Johanna Gray, Advocacy Consultant

I have to start the recap of our recent Alliance Hill Day with a huge THANK YOU to all of the participants. More than 80 people representing 29 HTCs and 22 states joined for meetings with Members of Congress and their staff members last week. And a special shout out to my colleagues who were all team leaders and cheerfully put up with meeting changes and about a million emails from me about the event.

In our meetings, we educated policymakers about a few main issues:

  • We provided general education about bleeding disorders and HTCs.
  • We discussed federal programs important to our community, including the 340B Drug Discount Program. We discussed how HTCs participate in the 340B Program and how program income that HTCs generate fund many important staff people and programs that benefit all of the patients seen at the center.
  • We shared information about the “alternative funding model” program, a new insurance practice by self-funded plans that shifts costs and patients from having medications covered by the plan to being passed to manufacturer assistance free product programs. This is impeding access to care for our patients and will raise costs for all patients, payers and taxpayers if left unchecked.

We had a great reception on all of these items. We heard broad support for HTC participation in 340B and each year we have a greater understanding by the Members of Congress and staff about HTCs and the importance of federal programs – including 340B – to our centers and the patients they serve. We also got a great response about the alternative funding issue. As a newer issue, we got lots of questions, too, but most folks recognized that the practice was wrong. (Getting folks in DC to agree that there’s a problem is at least half of the battle in trying to solve it!). We’re digesting all of the meeting evaluation forms and follow up needs but are hopeful that we’ll be able to work with Congress on a policy solution to the alternative funding issue in the coming weeks.

Finally, I’ll close with my annual request that folks consider joining us next year. We really do try to do all of the heavy lifting so all you have to do is show up and share your story. I think participants will even agree that it was fun, despite being on zoom again this year (see some of the team photos here!). If you would like to get more involved in educating or advocacy with Congress, please let us know!

Also in this Issue…

Notes from Joe
· “If not us, who? If not now, when?” – John F. Kennedy

Legal Update
· 340B Program Developments

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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