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…
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…
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…
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…
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…
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….
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…
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…
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…
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…
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…
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….
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…