News

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. …

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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,…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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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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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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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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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Important: Action Needed Regarding Medicaid and Badgercare Eligibility

Advocacy & Legislation, Industry News & Research

As you may have heard, the Medicaid and CHIP (called Badgercare in Wisconsin) programs are re-starting eligibility reviews. Community members may receive…

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Advocates Met with State Reps for WI Legislative Day – All Copays Count Legislation is Top Priority

Advocacy & Legislation, GLHF News

Community advocates gathered on March 1st at the State Capitol for GLHF’s Wisconsin Legislative Day. We shared stories of life with a bleeding…

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Medicaid and CHIP Continuous Enrollment Unwinding

Advocacy & Legislation, Industry News & Research

Get information on your state’s plan to restart yearly Medicaid and Children’s Health Insurance Program (CHIP) eligibility reviews. Do you or a…

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