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Spring Members Meeting and Hill Day, Washington, DC

March 29, 2020 - March 31, 2020


Hemophilia Alliance Spring 2020 Members Meeting

March 29 – 31, 2020

Marriott Marquis Washington, DC
901 Massachusetts Ave NW
Washington, DC 20001

Register for the meeting by scrolling down to the RSVP section and changing the “0” to “1” (or whatever number of people will be attending from your organization).

Note that, in the registration, we ask you if you’d like the opportunity to Advocate or Lobby at the Hill. Here is the distinction between the two:

Lobbying is:

  • Lobbying at the Hemophilia Alliance Hill Day is optional
  • Lobbying is often a specific “call to action” or an attempt to influence the outcome of a specific piece of legislation
  • HTCs that want to lobby will be put into separate groups from those who do not want to lobby
  • HTCs can lobby at Hill Day without violating federal grant rules
    • HTC staff members can lobby but must do so without using grant funds
    • When spending time lobbying, HTC staff members should use personal time and not include work hours

Advocacy is:

  • Providing education to Congress about the importance of HTCs and the 340B programs to the Bleeding Disorders community
  • Educating and telling your story without a specific request for the member to act on legislation or other proposals in not lobbying
  • The use of program income for educational activities is permissible as authorized under applicable federal guidance

Hotel reservations can be made starting Nov 11, 2019 at this web address:


We will be working with centers to bring patients to the Hill Day on Tuesday, March 31st. We ask that you bring a patient that will be able to talk to members of Congress about your HTC 340B Pharmacy program and the benefits the community receives. For more information, and to register one of your patients, click here.

Draft Agenda

Sunday, March 29th

8:00 am to 11:00 am: Board Meeting

2:00 pm: Welcome and Board Update, Strategic Plan for 2020

2:30 pm: Alliance Update – Joe Pugliese

3:00 pm: SNF Bill – how it will help HTCs – Ellen Riker

3:30 pm: HANS – How the PPO is growing – Jeff Blake

4:15 pm: Takeda

5:00 pm: End of Day

– –

Monday, March 30th

7:30 am: Breakfast

8:30 am: Alaska HTC – A Cinderella story – Mark Plencner

9:00 am: Medicaid – What’s new at HHS – George Oestreich

9:30 am: ITP at your HTC – Mike Tarantino, M.D.

10:00 am: Refreshment Break

10:30 am: WFH Update

11:30 am: PBMs – The changing landscape – Jeff Amond

12:00 pm: Lunch

1:15 pm: Gene Therapy – Stacy Croteau, M.D.

2:00 pm: Gene Therapy / Pharmacy Side – Mark Plencner

2:30 pm: Gene Therapy Infusion Preparation and Pricing – Joe Pugliese, Steve Powell

3:00 pm: Refreshment Break

3:45 pm: Legal Update

4:15 pm: Advocacy 340B plans by congress – Johanna Gray

4:45 pm: End of Meeting

5:45 pm: Check-in for Hill Day Briefing

6:00 pm: Hill Day Briefing and Dinner

– –

Tuesday, March 31st

7:00 am: Breakfast

8:45 am – 5:00 pm: Hill Visits


March 29, 2020
March 31, 2020


Hemophilia Alliance


Marriott Marquis Washington, DC
901 Massachusetts Ave NW
Washington, DC 20001
+ Google Map
(202) 824-9200


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