Alliance Update, December 2021

Alliance Update

Operations Update
by Sean Singh, Senior Vice President of Marketing and Operations

As we look in the rearview mirror on the past year it has a lot of highs and lows. We threatened you with an in-person meeting only to do the sensible thing and get us together virtually. While I am one for seeing everyone and enjoying the changes to your offices, living room, back yard and virtual beach scape. These daily visits come with a little stress which included am I centered on camera, how good the lighting is, did I remember to comb my hair after I got out of the shower, I am thirsty, when is a good time to take a sip or my very favorite, the many times I am talking away only to be reminded that “Sean, you are muted!” I miss conference calls where I can pace around my living room while focusing on the conversation and really being a part of the dialogue instead of being on “TV.”

As a team, we looked for ways to engage our members and continue to provide valuable information. We did our fair share of webinars and added great content from our manufacturing partners. We listened to your request and provided a nursing Continuing Education session. We are looking forward to offering more in 2022. As we evolve into this new environment of hybrid gatherings and more digital information, we would look to you for feedback on what works and doesn’t.

We are looking forward to looking you in the eye literally in the near future and to reconnecting in ways that will be beneficial to all our members. Here are updates about several of our key activities:

  • Harmony in Hemophilia
    by Karen Bowe, Director of Community Relations

    Harmony in Hemophilia continued its efforts to increase collaboration between our member HTCs and local NHF Chapters and HFA Member Organizations. As we look back, here are just a few of the highlights:

    NHF Collaboration: The Hemophilia Alliance launched the HTC Wall of Walkers Challenge, created to encourage HTC participation in the 2021 NHF Unite Walk program, and had the following outcome:

  • HTC teams participated in 28 of the 39 total walks, a 17% increase over total HTC teams participating in 2020.
  • HTC teams raised more than $27,000 for local Chapters, a 50% increase over the amount raised in 2020.
  • HFA Collaboration: The Hemophilia Alliance is proud to be the sole sponsor of HFA’s new program acknowledging federally supported Hemophilia Treatment Centers as a vital resource for patient care and aligning with its goal of ensuring sustainability for HTCs and protection of 340B programs. The program will include the following:

  • HFA database updates and improvements.
  • Creation of an HTC resource page on the HFA website.
  • 2 sessions at 2022 HFA Symposium for HTC and Hemophilia Alliance overviews.
  • Announcement of availability of resources and website updates in a press release and quarterly Dateline publications.
  • HTC clinicians to be subject matter experts at HFA hosted meetings and inclusion in HFAs National Speakers Bureau.
  • 2021 Webinars:

  • 340B Basics was presented by Elizabeth Karan to increase knowledge of HTC pharmacy programs and its importance to ensuring sustainability of HTCs. The audience included NHF Chapter leadership, staff, and community members.
  • HFA presented “An Introduction to HFA Mental Health and Wellness Task Force” to member HTCs at the Alliance Spring members meeting.
  • In a joint webinar with NHF, the Alliance launched the HTC Wall of Walkers challenge to NHF Chapter members as well as to member HTCs at the Alliance Spring Members meeting.
  • HTC/Chapter collaboration – In an effort to highlight program development as a result of collaboration between HTCs and local Chapters, the Executive Director of the Illinois Chapter and the Nurse Coordinator of the Maine Medical HTC both presented to NHF Chapter members on the benefits to the bleeding disorders community as a result of collaboration between HTCs and local Chapters.
  • HTC Growth Initiative: Goal – exploring ideas which ensure sustainability and growth of HTC pharmacy programs and develop plans to overcome obstacles preventing growth within a Center.

  • Total of 27 participants from 18 HTCs participating.
  • Focus on HTCs dispensing less than 5M units/year.
  • Evaluating SWOT plans per HTC.
  • 6 meetings total – November through April.
  • Intermittent Alliance team meetings to review and analyze responses.
  • Final in-person meeting in May to share outcome of monthly discussions and suggest recommendations for pharmacy program growth.

  • Data Portal and Center Contacts
    by Theresa Parker, Administrator

    In the first part of the year, we were working on a new look and function to our data portal. This allowed us to make entering your data more user friendly, as well as allowing us to store the data more efficiently. We saw a 25% increase in members entering data with positive feedback on the changes. We also added a Savings report to the portal so that you can view your centers’ progress at any time that is convenient for you. We would like to add more reports to the data portal that would assist you in analyzing your business. Suggestions regarding these new reports can be emailed to

    Also, we continue to strive for up to date and accurate information from our members. We send out a variety of correspondence (yearly center savings letter, membership invoice) and want to confirm we are contacting the proper person(s). A center contact update form is available to you on our website. Go to Once you have logged in click on the Alliance Members tab, then select Center Contact Update. You can also contact Theresa Parker, or your Hemophilia Alliance primary contact and we would be happy to email the form to you. Thank you in advance for your cooperation.

  • Information Technology
    by Kiet Huynh, Manager of IT Solutions

    It has been a year since I joined the team. My skills have been tested from the beginning and the Hemophilia Alliance team continues to expand my knowledge while I try to keep on top of the current environment. We have made changes to our website, enhanced the member section and continue to look for ways to get information to our members. I am looking forward to the evolution of our meetings as we meet in person and adding a virtual component to some of them. We are trying to keep pace with changes in technology and we hope you share some of your knowledge, good experiences and suggestions on how we can do more for you.

  • 2022 Spring Meeting Schedule

    These meetings will be in-person knowing that we might have to make changes to an alternate format.

    Event Name Date
    Board Retreat (Board Members and HA Staff Only) January 9th to 11th
    Pharmacists CE Conference January 27th to 28th
    New HTC Staff Meeting February 6th to 8th
    Linda Gammage Social Worker Conference February 23rd to 25th
    Spring members Meeting April 3rd to 5th
    Hill Day TBD
    HTC Growth Initiative May 15th to 17th

Also in this Issue…

Notes from Joe
· Looking Back, Planning Ahead

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

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

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