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Abogacía

Solos podemos hacer muy poco; Juntos podemos hacer mucho más. -Helen Keller

 

La Fundación de los Trastornos Hemorrágicos Lone Star es miembro de la Coalición para la Abogacía de Trastornos Hemorrágicos de Texas. Abogamos a nivel estatal y federal sobre cuestiones importantes para la comunidad de trastornos hemorrágicos. La coalición es un esfuerzo conjunto de la Fundación de Trastornos Hemorrágicos Lone Star y la Asociación de Hemofilia Texas Central. Obtenga más información sobre la coalición en: txbdcoalition.org

¡Días de Cabildeo en Austin 2023!

Acompañenos en nuestros Días de Cabildeo en Austin, el 1-2 de marzo 2023! Por favor envíe su formulario de inscripción completado a Karla antes del 10 de Enero de 2023!  Descargue el formulario de inscripción desde aquí.

¡Días de Cabildeo de NHF en Washington 2023!

Los Días de Cabildeo en Washington de la NHF vuelven a ser presenciales, del 8 al 10 de marzo de 2023.  La Fundación de Trastornos Hemorrágicos Lone Star y la Coalición enviarán un número limitado de personas a participar.  Las solicitudes ya están disponibles  aquí.

Prioridades Legislativas

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Click Here to learn more about TXBDC Austin Days.

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Click Here to learn more about TXBDC Washington Days.

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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.

  • Dear Addy: Finding Community

    Dear Addy, I am the only person I know who has a bleeding disorder. I don’t know any other patients at my HTC, and I live pretty far away from my nearest member organization, so I don’t usually get the chance to attend community events. I want to connect with others in the community, but The post Dear Addy: Finding Community appeared first on Hemophilia Federation of America.