Alliance Update, February 2020

Alliance Update

Notes about Upcoming Alliance Meetings
By Sean Singh

The More the Merrier: HTCs and Patients Wanted For Hill Day

We are in the final stages of planning for the 2020 Hemophilia Alliance Hill Day. This process takes a lot of coordination to schedule all the meetings with Members of Congress and we are hoping to finalize the list of participants in the next week or so. So, we are writing with two final requests for all Alliance members:

  1. Please attend the March Member Meeting and Hill Day! Thank you to the many Alliance members who have already registered to participate and we want to do a final call for any other centers to register. We do everything we can to make the event interesting, impactful and fun and we would be happy to answer any questions or help you overcome any barriers to your participation.
  2. Please invite a patient to join us in telling our story on Capitol Hill. We are able to accommodate additional patients and as a reminder, the Hemophilia Alliance will cover his/her transportation, hotel and meals costs. If you have a patient who is willing to come to DC and talk about all of the good work you do at the HTC with support from the 340B program, please let us know at your earliest. If you have any questions about sending a patient please contact Theresa Parker at or 727-688-2568.

Here are more details about the Spring Member Meeting and Hill Day:

We have a Draft Agenda for the Spring Members Meeting, which will be held in Washington DC on March 29th to 31st, 2020. The general meeting will begin on Sunday March 29th at 2 pm followed by a networking reception at 5:30 pm. Please register here and book your hotel stay. Should you have questions about the meeting agenda, space, accommodations or any other logistics please contact us anytime.

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May Meeting for NEW HTC Staff

We are pleased to announce we will be offering a meeting in May for NEW HTC staff or staff members that have not been to a Hemophilia Alliance meeting before. We are excited to be offering this additional meeting to our members. We know you have been asking about a meeting like this to be available. This meeting is being financially supported by our manufacturing partners.

Here are some Frequently Asked Questions:

Will the Hemophilia Alliance pay for transportation?
Yes, the Hemophilia Alliance will pay for transportation (airfare, train) to and from the meeting.

Who should attend?
Somebody who has never been to an Alliance meeting. It could be a doctor, nurse, physical therapist, social worker, pharmacist, administrative staff involved in running the HTC.

Will the Hemophilia Alliance pay for the hotel?
Yes, we will pay for two nights of hotel.

Will the Hemophilia Alliance provide for meals?
Yes, we will provide meals during the meeting.

When is the meeting?
May 6th to 8th, 2020. It will begin at 6 pm on Wednesday, May 6th and end at 12 noon on Friday, May 8th.

Where is the meeting?
Minneapolis, Minnesota.

How many people can my center send?
Each center should submit a list of three NEW people they would like to attend in preference order. We will select the first person on the list and as more space opens, we will go through the list as submitted. The deadline for submitting names is March 12th. We will offer a spot to one person from each site until we fill all the available spots.

How do I register for the meeting?
You can register here.

When is the deadline to register?
March 12th, 2020

What is on the Agenda?
Click here to see the Agenda.

Are there any other plans?
There are a limited number of spots available for a tour on Friday May 8th at 1:30 pm and presentation at University of Minnesota Health Fairview, Center for Bleeding and Clotting Disorders on Friday, May 8th at 1:30 pm. We will transport you from the Hotel to the University of Minnesota. You will be able to select to attend the tour when you register for the meeting.

Meeting Details:
May 6th to 8th 2020
Minneapolis, MN
Begins at 6pm on Wednesday.
Ends at 12 pm on Friday.
Additional tour to Fairview Center for Bleeding and Clotting Disorders to begin at 1:30 pm and end at 3 pm.

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Join us for an Informative Meeting at HTRS/THSNA in April
By Sean Singh

The Hemophilia Alliance will be holding a Pre-Conference session at HTRS/THSNA on Wednesday April 22nd, 2020. Lunch will be served at the meeting which begins at 1 pm. The meeting will be led by Joseph Pugliese President and CEO of the Hemophilia Alliance. The topic of the session is “Sustainability of the HTC Pharmacy (340B) with Emerging Therapies.” This will be an interactive session where we discuss financial models for emerging therapies. The current and pending changes make maintaining your current business and expanding your footprint critical for sustaining the comprehensive care mode. The Hemophilia Alliance continues to work with Insurance Companies, Brokers and Consultants to keep HTCs in network and continue to give them access to provide pharmacy services in dispensing factor products to their patients. Please RSVP to Theresa Parker at Please feel free to contact us at any time with questions about the program.

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2020 Meeting Schedule

  • Social Worker Conference: February 26th to 28th
  • Spring Members Meeting: March 29th and 30th in Washington, DC
  • Hill Day visits: March 31st in Washington, DC
  • HTRS/THSNA Preconference: April 22nd
  • Meeting for New HTC Members: May 6th to 8th in Minneapolis
  • Fall Members Meeting: October 4th to 6th

Also in this Issue…

Notes from Joe
· How Did We Get Here and Where Are We Going?

Washington Update
· Governmental Food Fight: GAO and CMS Sling 340B Related Publications Back-and-Forth?

Payer Update

Notes from the Community
· University of Michigan Launches Infusion U Program