Dear Addy: Biosimilars

November 9, 2015

Dear Addy, I keep hearing about biosimilars. What are they, and how do they differ from generic drugs? Sincerely, Curious About Products Hi Curious, Thanks for your question. A biosimilar is a pharmaceutical drug that is made to have similar active properties as a biological drug that has already been licensed. Biologics are really important […]

vWD Recombinant Clotting Protein Shown To Be Effective

August 3, 2015

Note: This is an edited version of a release originally published in Blood, the Journal of the American Society of Hematology (ASH).  On August 3, 2015, the journal Blood published study data indicating that the first protein engineered to help control bleeding episodes in patients with severe von Willebrand disease (vWD) had been shown to be safe and effective, […]

Dear Addy: CHOICE

July 29, 2015

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

HFA Patient Fly-In: Through Our Interns’ Eyes

July 7, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In. Below is their take on the week, and a bonus […]

Supreme Court Upholds ACA Subsidies

June 25, 2015

We’re pleased today to learn that the Supreme Court of the United States, in a 6-3 decision, upheld the subsidies provided under the Patient Protection and Affordable Care Act (ACA). These tax subsidies have allowed so many in our community to afford the care they need to treat their ‪bleeding disorders, and we are confident that these […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

2015 Advocacy and Government Affairs Interns

June 4, 2015

Earlier this year, we opened applications for a ten week advocacy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Adam and Matthew are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

Dear Addy: Is It Safe To Get A Tattoo With Hemophilia?

April 20, 2015

  Dear Addy, I want to get a tattoo, but am worried that my hemophilia will complicate things. Is this safe? Signed, Un-Inked ________ Dear Un-Inked, This is a subject that you and your hematologist need to discuss. Here are some questions to ask your hematologist: Safety—Is it safe for someone with hemophilia to get […]

Dear Addy: 340B Programs

April 7, 2015

Dear Addy, The specialty pharmacy that I have to use through my insurer doesn’t carry my preferred brand of factor so I have to go through the prior authorization process to get my factor. My hemophilia treatment center (HTC) does not have a 340B program but I know of another HTC that does and they […]

Dear Addy: COBRA and the ACA

February 23, 2015

Dear Addy: It used to be when you left or lost your job you could get COBRA coverage until you found a new job. What is happening to COBRA with ACA implementation? What happens now if I lose my job and need health insurance? Sincerely, Daniel, Hemophilia Patient ___________________________________ Dear Daniel, If you lose your […]

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