Category: Advocacy News

Intern Introspective: Experience on Capitol Hill

We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]

HFA Recognizes Congressional Representatives as 2018 Champions

On June 12, 2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]

Intern Introspective: Meet Alexandra and Catherine

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]

Bleeding Disorders Organizations Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

Click here for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation.(Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray MarketStabilization Legislation Senators Lamar Alexander (R-TN) and […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson Bill

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill.Why should you take action? The Graham-Cassidy legislation would harm our […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAAWASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ – The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with the […]

Intern Introspective: That’s a Wrap for La’Brittinee and Paul

Earlier this summer we welcomed our summer policy and government relations interns to our D.C. office. La’Brittinee and Paul are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, La’Brittinee and Paul: […]

ACTION ALERT: Vote Likely on Motion to Proceed

On Tuesday, the Senate will likely vote on a “Motion to Proceed,” which is the first step to open debate on health reform legislation. If the motion passes, they may consider a 2015 bill that will repeal parts of the Affordable Care Act without replacing it, or the Better Care Reconciliation Act (BCRA), the recent […]

Intern Introspective: Plasma Donation Center Tour

Nearing the end of their 10-week internship, La’Brittinee and Paul got an opportunity to tour Grifol’s plasma collection center in Frederick, Maryland. Centers like this collect plasma from donors and then return the red blood cells to the donor in one sitting. The plasma, which undergoes several levels of strict testing, is then pooled and […]

Update 2: Bioverativ Files Complaints Against CSL Behring's Idelvion

As noted in our July 10, 2017 story, Bioverativ has filed complaints in the U.S. District Court for the District of Delaware and with the U.S. International Trade Commission alleging that Idelvion, a novel factor IX albumin fusion protein developed by CSL Behring, infringes upon three Bioverativ patents.HFA, in collaboration with the National Hemophilia Foundation, […]