Word from Washington: November 2022

person holding folder in front of Capitol

Midterm elections are mostly wrapped up as November draws to a close. The race between Sen. Raphael Warnock and Herschel Walker heads to a runoff in early December, but regardless of the outcome in that contest, control of the U.S. Senate remains – narrowly – with the Democrats. Control of the House of Representatives, by […]

Press Release: First-Ever Gene Therapy Approved for Hemophilia B

red blood cells

FOR IMMEDIATE RELEASE  First-Ever Gene Therapy Approved for Hemophilia B  National patient advocacy organization issues formal statement.  WASHINGTON, D.C., Nov. 23, 2022—Hemophilia Federation of America (HFA), a national advocacy leader for patients with bleeding disorders, released a statement considering recent news that the U.S. Federal Food and Drug Administration (FDA) approved CSL Behring’s (CSL) HEMGENIX® […]

HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B

red blood cells

Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for those affected by bleeding disorders. Hemophilia imposes many burdens: painful and unpredictable bleeding; joint damage or other serious long-term complications; onerous treatment regimens; and numerous other constraints on personal and family life. HFA […]

BioMarin Investigational Gene Therapy Updates

DNA strand

An update for the hemophilia community from BioMarin regarding a previously reported serious adverse event in the ongoing hemophilia A gene therapy [valoctocogene roxaparvovec, BMN 270] Phase 3 study that was deemed, by the Independent Data Safety Monitoring Committee and the company, very unlikely to be related to the investigational therapy. Clinical Development Program Update […]

Open Enrollment For Insurance Plans Begins Again

person holding folder in front of Capitol

Open enrollment is a time frame each year when health insurance plans are required by law to accept applications from new plan enrollees regardless of their health history. This also is the time when you can choose to stay with your existing health plan if it is the right one for you. Open enrollment dates […]

An “Unspeakable” tragedy brings community together

Filming Unspeakable at cemetary

Over 250 people registered for HFA’s first webinar in a 4-part series to talk about the tainted blood tragedy with Robert C. Cooper, Blood Brother, writer, director, executive producer, and owner of Mezo Entertainment with over 400 episodes on television who is best known for his work on the series “Stargate” and now “Unspeakable.” Based on […]

Females in Research Sharing and Translation (FIRST) Project

Inherited bleeding disorders, such as hemophilia and von Willebrand disease (vWD), have long been under-recognized as causes for bleeding in females. Part of the problem with this under recognition has been the lack of opportunities for female engagement in research related these bleeding disorders.

Washington Wire: September 2022

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HFA Fly-In and Week of Advocacy HFA was excited to return to in-person meetings for its ninth annual Patient Fly-In this year, after two years of virtual events. Twenty community members from 10 different states came to Washington, D.C. for policy and advocacy briefings, followed by meetings on Capitol Hill with 35 Congressional offices. Advocates […]

HFA hosts 9th annual patient Fly-In

building facade

HFA hosted our 9th Annual Patient Fly-In in Washington, D.C. alongside an online Virtual Week of Advocacy from September 17 – 20. Advocates asked members of the House to support HR 5801, HELP Copays Act, introduced to protect vulnerable patients by reining in harmful health plan pricing schemes such as copay accumulator adjusters. This bipartisan […]