25 Patient and Provider Groups Applaud June Supreme Court Ruling Though Express Concern About Other Plaintiffs Keeping FDA Authority Challenge Alive

Hemophilia Federation of America is among 25 organizations representing patients with serious health conditions and disabilities and their providers who applaud the Supreme Court’s unanimous June ruling reversing the Fifth Circuit’s decision in Alliance for Hippocratic Medicine et al. v FDA et al, on the grounds that the plaintiffs don’t have standing in their challenge […]

Advocacy News: June 2024

Capitol rooftoop

Word from Washington Federal Courts Unanimous Supreme Court dismisses challenge to FDA approval for mifepristone In a case that threatened to restrict access to hormonal therapies for women with bleeding disorders, the U.S. Supreme Court unanimously reversed lower court decisions that effectively invalidated the 2000 approval by the Food and Drug Administration (FDA) of the […]

Advocacy News: May 2024

Word from Washington Federal Agencies CMS extends waiver flexibilities, reporting requirements for Medicaid “unwinding” redeterminations According to the latest KFF Medicaid Unwinding Enrollment Tracker,  nearly 23 million Americans have lost Medicaid coverage since states were allowed to resume eligibility verifications following the COVID-19 public health emergency (PHE). Nearly 70 percent of Medicaid terminations continue to […]

Advocacy News: April 2024

Word from Washington After one year, Medicaid coverage losses during “unwinding” continue to surpass worst fears According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 21 millionAmericans have lost Medicaid coverage during the first year after states were allowed to resume eligibility verifications following the COVID-19 public health emergency. There remains wide variation […]

Advocacy News: March 2024

facade of building

Word From Washington Federal Agencies Supreme Court Congress State of the States Oregon becomes first state in 2024 to pass protections against copay accumulator adjusters. Oregon Governor Tina Kotek (D) signed legislation unanimously passed by the House and Senate that protects consumers in state-regulated health plans from harmful and discriminatory copay accumulator adjuster programs (CAAPs). […]

Word from Washington: December 2023

Mid-December, for many people, marked the close of the open enrollment period for health insurance plans that will provide coverage beginning January 1, 2024. Preliminary data shows that enrollment in  Affordable Care Act (ACA) Marketplace coverage during the open enrollment period continued to grow at a record-breaking pace. The federal government projects that over 19 […]

Statement: HFA and NBDF Address WHO Recommendations


Hemophilia Federation of America (HFA) and the National Bleeding Disorders Foundation (NBDF) are deeply concerned by the World Health Organization’s (WHO) recommendation of cryoprecipitate (pathogen-reduced and non-pathogen-reduced) in the 23rd Essential Medicines List (EML) for treatment for hemophilia.   With FVIII concentrates available globally, the inclusion of cryoprecipitate as treatment for hemophilia is an egregious, misguided […]

Word from Washington: November 2023

man smiling holding folder

HFA returned to Capitol Hill on Nov. 13 for its tenth annual Patient Fly-in and Congressional reception. Twenty-two community members from 16 different states came to Washington, D.C., for policy and advocacy briefings, followed by meetings on Capitol Hill with 35 Congressional offices.   Advocates asked lawmakers to support the HELP Copays Act (H.R. 830, S. […]

HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies

medical supplies

On January 1st, Blue Cross Blue Shield of Tennessee (BCBST) implemented formularies for their health plans (individual, small group, and large group) that remove 17+ bleeding disorders treatments from coverage. These exclusions threaten the health of potentially hundreds of Tennesseans who live with inherited blood or bleeding disorders. Patients who have been stable on their […]