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Advocacy

Alone we can do so little; Together we can do so much. -Helen Keller

 

The Lone Star Bleeding Disorders Foundation is a member of the Texas Bleeding Disorders Advocacy Coalition. We advocate at the state and federal level on issues important to the bleeding disorders community. The Coalition is a joint effort of the Lone Star Bleeding Disorders Foundation and Texas Central Hemophilia Association. Learn more about the coalition at txbdcoalition.org.

2023 Austin Days!

Join us for our 2023 Austin Days, March 1-2! Please send your completed registration form to Karla by January 10th, 2023!  Download the registration form here.

2023 NHF Washington Days!

NHF Washington Days is back in person, March 8-10, 2023.  LSBDF and the Coalition will be sending a limited number of people to participate.  Applications are now available here.

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News from HFA

  • Word from Washington: August 2023

    Advocates are responding to yet another payer-side, cost-saving scheme that harms patient access to medicine. The latest version, the so-called “alternative funding program” (AFP), is a shady strategy pitched to employers that promises to lower health plan spending on specialty drugs such as bleeding disorder products and other expensive medicines. AFP vendors advise employer health The post Word from Washington: August 2023 appeared first on Hemophilia Federation of America.

  • UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices

    UPDATE as of 8/28/2023 Takeda, in agreement with the U.S. Food and Drug Administration (FDA), has decided to voluntarily replace BAXJECT® II reconstitution devices produced by Baxter between October 2021 and January 2022 co-packaged for use in conjunction with RECOMBINATE™ [Antihemophilic Factor (Recombinant)] and RIXUBIS® [Coagulation [Factor IX (Recombinant)]. Takeda has received reports of white The post UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices appeared first on Hemophilia Federation of America.

  • Dear Addy: In-District Legislative Meetings

    Dear Addy, With Congress in recess, how can I continue to participate in legislative advocacy? Signed, Bleeding Disorders Advocate Dear Bleeding Disorders Advocate, Every August, the United States Congress embarks on a recess, temporarily adjourning its legislative business and allowing members to return to their home states and districts. The August recess tradition serves as The post Dear Addy: In-District Legislative Meetings appeared first on Hemophilia Federation of America.

  • Word from Washington: July 2023

    July saw mounting coverage losses from the national Medicaid unwinding. As of July 28, nearly four million people have been disenrolled from Medicaid since redeterminations began in April 2023. Three-quarters of that total lost coverage for procedural reasons, i.e., paperwork, and may still be eligible for Medicaid. In response to this dismaying track record:  Also The post Word from Washington: July 2023 appeared first on Hemophilia Federation of America.

  • Blog: Intern Introspective #7

    It feels incredibly surreal to think about the fact that this is my final week at HFA this summer, and that in less than a week I will no longer be exploring D.C. and will instead be back home in San Diego. The past ten weeks here in Washington, D.C. with HFA have been an The post Blog: Intern Introspective #7 appeared first on Hemophilia Federation of America.