Category: Advocacy News

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 […]

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

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 […]

HFA Hosts 9th Annual Patient Fly-In

HFA hosted our 9th Annual Patient Fly-In in Washington, D.C. alongside an online Virtual Week of Advocacy from September 17 – 20. Advocates asked members of the House to support HR 5801, HELP Copays Act, introduced to protect vulnerable patients by reining in harmful health plan pricing schemes such as copay accumulator adjusters. This bipartisan […]

2022 Summer Internships and Young Adult Advocacy Summit on Location in Washington, DC

Summer 2022 is gearing up to be an exciting time here at HFA for young adults and college students in our bleeding disorders community. We will be kicking off the summer in Washington, DC with a 10-week paid internship for two eligible college students and ending the summer with an exciting Young Adult Advocacy Summit […]

HFA Recognizes 2021 Congressional Champions & Hosts Virtual Fly-In

Due to ongoing concerns regarding public gatherings and the impact of COVID-19 on in-person legislative visits, HFA is again holding its annual Patient Fly-In and Congressional Reception experience as an online campaign. The event is taking place from November 15-19, 2021. On November 16th, grassroots bleeding disorders advocates are participating in Congressional visits by video […]

Intern Introspective: Updates from our 2021 Intern Class

The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more […]

Intern Introspective: Tameelah's Podcast

 As a part of the HFA Policy and Government Education internship, the interns are tasked with creating a final capstone project encompassing what they have learned, culminating in the creation of advocacy and policy programming that is aimed at a young adult audience. The capstone is fully intern-driven, from concept to execution, with support from […]

Intern Introspective: Will's Reflections

By Will Hubbert As sad as it is to write, my time as an intern at HFA has come to an end. I’ve loved my time here, so I want to use this last reflection as an opportunity to thank my mentors and recommend the program. HFA’s internship is a truly amazing experience, and I […]

Intern Introspective: Meet Our 2020 Policy & Government Relations Interns

My name is Tameelah Dawson. I am 21 years old from Lexington, S.C., and currently a senior at Claflin University in Orangeburg, S.C., pursing a bachelor’s degree in psychology. I have been heavily active in the hemophilia community for well more than five years. I’ve served as a junior board member for Hemophilia South Carolina […]

HFA & NHF Release Preliminary Executive Summary of Safety Summit

The Hemophilia Federation of America (HFA) and National Hemophilia Foundation (NHF) are seeking comments from the bleeding disorders community on the executive summary of the NHF/HFA Safety Summit convened in Washington, DC, on January 29-30th, 2020. The summit brought together stakeholders from across the bleeding disorders community, including individuals affected by bleeding disorders, clinicians, patient […]