Notes from Joe, August 2022

Notes from Heidi and Joe

Serving Members Where They Are
by Joe Pugliese and Heidi Lane

Dear Bleeding Disorders Community,

The Alliance serves all our members wherever they may be. We also remain committed to helping them serve all of their patients. Last week, we received a note from a member announcing they would not be attending our Fall Member Meeting in Salt Lake City in support of Utah being included in California’s ban on state-funded and state-sponsored travel to states with discriminatory laws (Assembly Bill NO. 1887). We recognize other members may hold similar positions and as such we felt it important and timely to share excerpts from our response below. As always, we appreciate hearing from our members.

First of all, thank you for your email. We very much appreciate hearing from our members, both what we do well and what we can do better. We were unaware Utah was recently added to California’s AB 1887. We thank you for bringing this to our attention. While we understand your reasons for choosing not to attend a meeting in Utah, we hope to provide you with information to reconsider and attend in-person. The location of our member meetings are chosen to expose our members to different areas of our country. First and foremost, our mission is “… to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders”. Though not explicitly stated, this also includes “wherever they may be”. Salt Lake City was chosen both because we have never held a meeting in Utah and also to provide Heidi, our outgoing Chair, the opportunity to showcase Salt Lake City, home to the Utah Center for Bleeding and Clotting Disorders. Heidi was personally involved in establishing their factor program in Utah and will be sharing their story.

We also recognize there are several polarizing issues facing our country and acknowledge those issues impact our members and the patients/families they serve. Our member HTCs provide care to patients, regardless of their political or social environment, and in some cases despite it. We believe that the HTC presence and mission in those states that have chosen to adopt regressive policies should be celebrated as an example of what is best in healthcare. We understand your choice, but ask that you reconsider and attend in-person to join us in supporting local businesses who are supportive of inclusion and the rights of the LGBTQ community. The practice of supporting local businesses is not new to the Alliance. We intentionally seek out local businesses in support of the communities we visit. Salt Lake City happens to have a concentration of locally owned businesses supportive of and owned by members of the LGBTQ community. Additionally, we generally hold our meetings at Marriott hotels who strongly support inclusion and the rights of the LGBTQ community:

We thank you for expressing your concerns and hope you reconsider and attend the Fall Member Meeting in-person. Your insight and expertise gained through years of experience in working with the bleeding disorders community is invaluable and best appreciated through in-person attendance and participation. You will be missed if you choose not to attend, however, all sessions will be available after the meeting through the member portal. We will not be providing a live virtual option.


Heidi and Joe

Also in this Issue…

Alliance Update
· Recognizing the 2021 Wall of Walkers Winners
· Join Us in Salt Lake City!

Legal Update
· Proving the Absence of a Requirement: Use of Funds Derived from the 340B Program for Indigent Care

Payer Update
· The Payer Relations Communication Highway

Notes from the Community
· Recent Articles of Interest

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