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  • All
  • Advocacy News
  • Community Voices
  • Dateline
  • Dear Addy
  • Health & Wellness
  • HFA News
  • Industry News
  • Infusing Love
  • Medical News
  • State of the States
  • Uncategorized
  • Washington Wire
  • Word From Washington
Word From Washington

Word from Washington: January 2023

HFA reports on a particularly concerning insurance problem unfolding in Tennessee, and how HFA is responding; news on Medicaid eligibility reviews; changes in blood donation policy; and much more.

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Washington Wire

FDA Proposes Blood Donation Changes

On Friday, January 27, 2023, the U.S. Food and Drug Administration announced proposed changes to national blood and plasma donation policies. The draft FDA guidance, …

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Medical News

WFH Gene Therapy Registry: now live!

The World Federation of Hemophilia (WFH) has developed a registry to monitor the long-term safety and efficacy of gene therapy for people with hemophilia: the WFH Gene Therapy Registry (GTR). The launch of the WFH GTR coincides with the first approvals of gene therapy for hemophilia by both the United States Food and Drug Administration (FDA) and the European Medicines Agency (EMA).

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Advocacy NewsUncategorized

HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies

On January 1st, Blue Cross Blue Shield of Tennessee (BCBST) implemented formularies for their health plans (individual, small group, and large group) that remove 17+ …

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Dear Addy

Dear Addy: Pharmacy Choice

A community member writes in about their struggles with a friend who is pressuring them to switch to the specialty pharmacy that they work for. Addy share tips with writer as how to try to both keep their friendship and their pharmacy.

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State of the States

State of the States: Q4 2022

States win authority to restart Medicaid eligibility determinations in April The omnibus spending legislation passed late in the year by Congress will let states resume …

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Word From Washington

Word from Washington: December 2022

On December 23rd, Congress passed a $1.7 trillion year-end spending package that averts a government shutdown and funds the government through September 2023. The 4,000+ …

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Dear Addy

Dear Addy: Giving Back

Dear Addy, I want to give back this holiday season, but I’m not sure how. Can you recommend ways to be more involved in my …

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HFA News

Summary of HFA’s Convening for Research on Women with Bleeding Disorders

On October 28, 2022, thirty-two bleeding disorders (BD) community stakeholders met to learn about BD in women, discuss gaps in care and research for women, …

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Word From Washington

Word from Washington: November 2022

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 …

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State of the States

State of the States: Fall 2022

In this edition of State of the States, South Dakota votes to expand Medicaid, Oregon receives landmark approval to provide continuous Medicaid coverage for young children, and Delaware joins 14 other states in protecting copay assistance for consumers. Midterm elections result in little change in partisan control of state legislatures while states race to prepare for the looming end of the COVID public health emergency and the prospect of mass Medicaid terminations.

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HFA News

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

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 …

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HFA News

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

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 …

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Industry News

BioMarin Investigational Gene Therapy Updates

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 …

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Dear Addy

Dear Addy: Holiday Self-care

Dear Addy, With the holidays ahead of us, I’m trying to focus on taking care of myself. However, I struggle to do this between family, …

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