News

Two New MASAC Documents Focus on Access to Substance Use Facilities and Treatment Recommendations

Health and Well Being, Industry News & Research

MASAC issued to two new documents during the NBDF’s Bleeding Disorders Conference this past August. The National Bleeding Disorders Foundation (NBDF) is…

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All About Bypassing Agents for Hemophilia

Industry News & Research, Living with a Bleeding Disorder

Learn more about these treatments for inhibitors. One of the most problematic issues that can occur with hemophilia are inhibitors—a complication that happens…

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Why Donating Plasma is Essential for Research & Diagnostic Testing

Industry News & Research

Is donating plasma safe when you have a severe bleeding disorder? In most cases, the answer is yes! Plasma fully regenerates in…

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National Hemophilia Foundation has a New Name: National Bleeding Disorders Foundation (NBDF)

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

In 1948, the foundation got its start as simply “The Hemophilia Foundation” – then in 1956, the foundation formally incorporated into what…

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Gene Therapy: One Down, But One to Go

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

Roche is discontinuing its investigational hemophilia A gene therapy called SPK-8016. (SPK refers to Spark Therapeutics, which is carrying out trials) But clinical…

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New Therapy for Hemophilia B and Inhibitors

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

Alhemo™ (concizumab injection) is used for hemophilia B patients who have developed inhibitors, which prevent replacement factor IX therapies from working properly….

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In For a Bad Surprise

Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

As of 2022, the federal “No Surprises Act” protects people covered under group and individual health plans from receiving surprise medical bills…

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A Guide to Living with von Willebrand Disease is Back!

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The world’s first book on the world’s most commonly inherited bleeding disorder, by Laureen A. Kelley and Paul Clement, is back in…

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Advocacy Groups Voice Concerns Over Payer Matrix’s Self-Identification as Patient Advocacy Company

Advocacy & Legislation, Industry News & Research

Advocacy groups representing various disease communities voice concerns over Payer Matrix’s classification as a ‘Patient Advocacy Company.’ Read about their viewpoints and…

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Takeda Raises Issue with some BAXJECT® II reconstitution devices for use in conjunction with RECOMBINATE and RIXUBIS® in the U.S.

Industry News & Research

Takeda recently raised an issue with some BAXJECT® II reconstitution devices produced between October 2021 and January 2022 for use in conjunction…

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Wisconsin All Copays Count Coalition Gains Momentum, Addresses Challenges of Copay Accumulator Adjustors

Advocacy & Legislation, GLHF News, Industry News & Research

In an effort to ensure that all copays count with insurance companies, and address the challenges of Copay Accumulator Adjustors, the Wisconsin…

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Legislation Restricting Accumulators and Maximizers Have No Impact on Premiums, According to a Global Health Living Foundation Analysis

Advocacy & Legislation, Industry News & Research

“Insurance companies assert that restricting accumulator and maximizer programs will cause higher health insurance premiums for everyone, but that claim is false….

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First Hemophilia A Gene Therapy Approved

Industry News & Research

The US Food and Drug Administration (FDA) approved Roctavian, a one-time gene therapy for adults with severe hemophilia A who do not…

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As Part of Medicaid “Unwinding,” Disenrollments Are Now Underway in about 40 States. Will You Lose Your Medicaid? Learn What You Can Do!

Health and Well Being, Industry News & Research

Reports from 26 States Show More than 1.5 M Beneficiaries Have Already Been Disenrolled. Wisconsin residents: Congress told states it was time…

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Rate of Coverage Losses from Medicaid Unwinding Continues to Cause Alarm

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Concern grows over the mounting tally of Medicaid coverage losses impacting people who remain eligible for the program. Read how federal regulators…

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FDA Approves First-Ever Nonprescription Oral Contraceptive

Health and Well Being, Industry News & Research

The new approval will allow consumers to purchase this oral contraceptive medication without a prescription at stores and online. The U.S. Food…

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Patient Safety in the Age of Gene Therapy

Industry News & Research

This paper takes a broad, holistic view of patient safety in the era of hemophilia gene therapy. After several decades of preclinical…

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Statement: HFA Responds to Latest Gene Therapy Announcement

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Yesterday, the U.S. Food and Drug Administration approved Roctavian (valoctocogene roxaparvovec), the first gene therapy for hemophilia A. This new treatment option, for the treatment of…

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Sanofi Announces Data Showing Effective Bleed Protection in Children with Severe Hemophilia A

Industry News & Research

Pivotal data from the Phase 3 XTEND-Kids study evaluating ALTUVIIIO™ [Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein] once-weekly prophylaxis, a factor VIII replacement…

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FDA Approves BioMarin’s Gene Therapy for Adults with Severe Hemophilia A

Industry News & Research

BioMarin Pharmaceutical Inc. today announced the U.S. Food and Drug Administration approved ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) gene therapy for the treatment of adults…

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Patient Safety in the Age of Gene Therapy a Central Focus of Review Article

Industry News & Research

After several decades of preclinical and clinical research, pitfalls and progress, gene therapies for hemophilia A and B have become a reality…

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Susan Skinner Memorial Fund Scholarship Program is Open

Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

that the call for applications for the Susan Skinner Memorial Fund (SSMF) Scholarship program is now open! Please spread the word among…

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An Alarming Rate of Coverage Losses

Advocacy & Legislation, Industry News & Research

Early data on Medicaid “unwinding” shows an alarming rate of coverage losses for enrollees who may still be eligible. Colorado and Texas…

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Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review

Industry News & Research

Authors of the review posit that reference intervals such as those utilized in thrombosis and hemostasis, are based on structural inequities. A…

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