Category: Advocacy News

HFA Special Policy Report: New Medicaid Rules and Medical Exemptions

By Adam Alver, Policy Director Medicaid Work Reporting Requirements Are Here Major changes to Medicaid are already reaching patients in several states. Beginning no later than January 1st, 2027, certain adults will have to show they are working, attending school, volunteering, or taking part in another approved activity to enroll in or keep their Medicaid […]

Editorial: The Preservation of Protection

For more than 50 years a small team at the Centers for Disease Control and Prevention has helped protect Americans living with hemophilia and other inherited blood disorders. Its work rarely makes headlines. But for families who depend on safe treatment, accurate diagnosis, reliable public health data and evidence-based care it can be lifesaving.  Today […]

HFA Submits Testimony to House Appropriations Committee Subcommittee

  In April 2026, Hemophilia Federation of America submitted written testimony to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. As HFA pursues continued support of world-class care for patients and ensuring the nation’s duty and responsibility to product safety, the testimony is one of many ways […]

Why Copay Fairness Matters for the Bleeding Disorders Community

For people living with bleeding disorders, access to treatment isn’t optional, it’s life-sustaining. Yet every year, too many individuals and families are forced to navigate a healthcare system that makes essential care harder to afford, harder to access, and harder to sustain. At HFA, we believe in building clear pathways to care: systems that are […]

Word From Washington: A New Year, Similar Policy Fights

By Adam Alver, Policy Director A New Year, A New Format, and An Important Reminder In 2026, HFA plans to share one Word From Washington and one State of the States each month, alternating them to keep our readers updated. HFA will also publish special reports, such as last year’s report on rural health. After […]

Patients Need a Path Forward: 40 Patient Advocacy Orgs Urge Senate to Extend ACA Tax Credits

Washington, D.C. — Forty non-partisan, nonprofit organizations representing millions of patients with serious and chronic health conditions applaud the House for advancing a clean three-year reauthorization of the Affordable Care Act (ACA)’s enhanced advance premium tax credits. This vote marks an important first step for millions of people who rely on the exchange for high […]

Word From Washington: The Shutdown, Health Insurance, and Protecting Our Community

By Adam Alver, Policy Director A New Take on Word From Washington For this month’s article, we’ve made some changes. We know our community includes people with all kinds of backgrounds. Some follow every twist in Washington, and others just want the key takeaways. This update is written to be clear and easy to follow, […]

State of the States: Grappling with Healthcare Changes

By Adam Alver, Policy Director The Big Beautiful Bill and State Healthcare The passage of H.R. 1 earlier this year, as we discussed in our most recent Word From Washington post, will have major impacts on the healthcare system across the United States. One of the most significant set of changes within the bill broadly […]

Word From Washington: The “Big Beautiful Bill” and Bleeding Disorders

Adam Alver, Policy Director The Passage of the “Big Beautiful Bill” As we recently discussed during our August 6 Organizing Call, HR 1, or the “One Big Beautiful Bill Act,” (OBBBA) was signed into law by President Trump on July 4. It was a massive bill that will have wide-ranging effects on American healthcare through […]

Dr. Dana Kuhn: Sharing His Thoughts in a Letter to our Community

To the Bleeding Disorders Community, As a legacy leader in this community, especially during the tumultuous years (1990-1995) where this community united to take on the US government, pharmaceutical companies, and blood collection businesses, for the sake of blood safety, I am very concerned that we stay vigilant and protect the advocacy work we sacrificed […]