News
Where is Your HTC?
Advocacy & Legislation, Living with a Bleeding Disorder
Do you need an HTC? A new HTC? Do you need to find one when you travel across the US? Check out the…
Huge Win for Advocacy Groups as People with Bleeding Disorders See Increased Equity and Access to Behavioral Health Facilities
Advocacy & Legislation, Health and Well Being
The Bleeding Disorders Substance Use and Mental Health Access Coalition, National Bleeding Disorder Foundation (NBDF), and Hemophilia Federation of America (HFA), are…
What is “Health Equity”?
Advocacy & Legislation, Living with a Bleeding Disorder
Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…
NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
NBDF Celebrates HHS Final Rule Strengthening Protections Against Disability Discrimination Celebrating a monumental victory for individuals with disabilities across the United States. …
Privacy Please!
Advocacy & Legislation, Living with a Bleeding Disorder
Patient privacy continues to be a huge concern worldwide, especially in the healthcare field, and especially online. The states of Washington, Nevada,…
The Joy of Lobbying the Senate on Behalf of my Sons with Hemophilia
Advocacy & Legislation, Living with a Bleeding Disorder
How I advocated for the bleeding disorders community on Capitol Hill. by: Joe MacDonald Last Thursday, I visited Washington, D.C., to join my…
Bleeding Disorders Awareness Month
Advocacy & Legislation, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Each March, the community calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This time gives patients and…
GLHF Testifies Before the Assembly Health Committee About Harmful Insurance Practices Including PBMs and Copay Accumulator Adjuster Programs
Advocacy & Legislation, GLHF News
Great Lakes Hemophilia Foundation and community advocates spent the day in Madison on February 14 educating legislators and showing support for the Pharmacy Benefit…
NBDF Government Relations Update
Advocacy & Legislation
Community members and policymakers at the state and federal levels nationwide are starting conversations about copay accumulators, product safety, and more, with…
Court Overturns Accumulator Adjuster Rule
Advocacy & Legislation, Living with a Bleeding Disorder
Court orders HHS to revise federal regulations permitting harmful copay accumulators In a preliminary victory for consumers, a federal judge in the…
World Hemophilia Day 2024 Theme Revealed
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event…
WFH Humanitarian Aid Program supports Syrian refugees (Part 1: Karam’s story)
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) provides care to people with bleeding disorders (PWBDs) all around the world—including individuals living in refugee…
Know Who Represents You
Advocacy & Legislation
Your voice matters! It’s important that policymakers, elected officials, and other legislative staff hear from people with bleeding disorders in order to…
Court Rules in Favor of Patients Regarding Copay Accumulator Adjustor Programs
Advocacy & Legislation, Living with a Bleeding Disorder
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the…
Learn More About Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
There are several programs and resources designed to assist individuals and families grappling with the financial burden of living with an inheritable…
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…
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…
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….
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…