Notes From The Community
The Alliance Pharmacy Pledges Support for HFA’s Helping Hands Program
In October, The Alliance Pharmacy (TAP) announced a matching donation challenge, encouraging HTCs, specialty pharmacies, and individuals to donate to the Hemophilia Federation of America’s Helping Hands Program. TAP has pledged a $100,000 donation and encourages others to participate. HFA’s Helping Hands Program, which assisted many community members and families, was discontinued in 2024. TAP hopes its effort will bring back this important resource to the community. For more information, see the TAP press release and video – TAP Donation Challenge.
BD SUMHAC Accepting Applications for the 2025 State Advocacy Program!
by Karen Bowe-Hause, Director of Member and Community Relations
We are thrilled to announce the 2025 State Advocacy Program and the opportunity to invite you to join us in this critical work! The Bleeding Disorders Substance Use and Mental Health Access Coalition’s (known as BD SUMHAC) State Advocacy Program is dedicated to improving access to behavioral health treatment facilities for the bleeding disorders community across the nation by addressing the unique barriers present at the state level. Through this initiative, we partner with selected state teams to identify champions within state regulatory agencies, assess state-specific regulatory landscapes, and develop actionable next steps for advocacy.
Who Should Apply?
National Bleeding Disorders Foundation chapters or Hemophilia Federation of America member organizations partnering with Hemophilia Treatment Centers in states where individuals have been denied access to mental health or substance use disorder treatment facilities are eligible and encouraged to apply.
Apply here now!
Applications are due by Friday, December 6th.
What Have We Accomplished with the State Advocacy Program?
Launched in September 2023, BD SUMHAC’s State Advocacy Program began with participation from five state teams: Michigan, Minnesota, Montana, North Carolina, and Texas. Each team was led by advocates from local hemophilia treatment centers and bleeding disorder chapters. These teams have made incredible progress across the three core objectives:
- Engaged State Agencies: Each team identified at least one champion within a state agency who agreed to facilitate access for anyone with a bleeding disorder denied mental health (MH) or substance use disorder (SUD) treatment in their state.
- Mapped Regulatory Landscapes: Teams completely or partially mapped the regulatory landscapes of inpatient and residential MH and SUD facilities in their state.
- Determined Next Advocacy Steps: Teams developed actionable plans to address identified barriers.
We’re excited to build on this progress and expand impact through the 2025 State Advocacy Program!
Learn more about the work of the 2024 State Advocacy Program teams here.
Also In This Issue…
Jeff Weighs In
Advocacy Update
- The 2024 Election & Potential Impacts on HTCs
- Hemophilia Alliance and National Bleeding Disorders Organizations Advocate for Improved Categorization of Bleeding Disorders Treatments under US Pharmacopeia
Member and Community Relations Update
- Advocacy in Your State – Don’t Miss Out On Providing An HTC Voice!
- Member and Community Relations National Patient Organization Partnership Update
Administration and Operations Update
- Website Access, Member Event Registration and the Data Portal
- Upcoming Meetings