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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 […]

Dear Addy: Medical Benefit vs. Pharmacy Benefit

February 9, 2015

Dear Addy: My factor is moving from the medical benefit to the pharmacy benefit in 2015 and I’m worried. What should I watch out for? From, Jermane, severe hemophilia B ______________________________________ Thanks for writing, Jermane. We are seeing many insurers around the country making this switch. In several instances, insurers are placing treatment products for […]

Dear Addy: Specialty Pharmacy vs. PBM

January 12, 2015

Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as “…distinct from traditional pharmacies in coordinating many aspects of patient care […]

Dear Addy: New Year, New Goals

December 29, 2014

Dear Addy, My company is having a New Year’s Resolution exercise drive in 2015. I want to participate like everyone else, but with my hemophilia I have limitations and joining a gym is expensive. What can I do to get involved and exercise like everyone else?  Signed,  Ben, Adult Male with Hemophilia B   ________________________________________________ […]

Baxter Files For FDA Approval of Recombinant Treatment For von Willebrand Disease

December 22, 2014

Baxter International Inc. today announced that the company has submitted a biologics license application (BLA) to the United States (U.S.) Food and Drug Administration (FDA) for the approval of BAX111, the first highly-purified recombinant von Willebrand Factor (rVWF) in clinical development as a treatment for patients with von Willebrand disease, the most common type of […]

Dear Addy: Holiday Travel

December 15, 2014

  Dear Addy, “My family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son’s bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]

Dear Addy: In-Network

November 11, 2014

[glossary_exclude]   Dear Addy, I have heard from a friend that their hemophilia treatment center (HTC) is no longer “in-network” for their insurance plan but instead is “out-of-network.” What does this mean and should I be worried about my insurance plan changing?  Signed,  Nervous Over Network _______________________ Dear Nervous, The term “out-of-network” refers to those […]

Six Ways to Be Safe and Healthy This Halloween

October 31, 2014

This guide was put together by the Centers for Disease Control and Prevention (CDC), and is a great addition to our recent FitFactor post on watching how much sugar is in your food. We hope that you and your family stay safe this Halloween. Don’t let your health get tricked this Halloween! Here are a few ways to stay […]

Dear Addy: Choice in Health Care

September 30, 2014

Dear Addy, I am frustrated because my insurance company has mandated that its members use a single pharmacy provider. What can be done to stop this denial of choice? Signed, Pharmacy Frustrated< ________________________________________________ Dear Frustrated, Health insurance providers are making this change as a cost savings measure. In order to keep their costs down, and […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share […]

Dear Addy: Max Out-of-Pocket

September 1, 2014

Note: This article was updated on 11/10/2015 to reflect 2016 out of pocket maximum limits.   Dear Addy, I’m a confused individual with private health insurance. I read that under the Affordable Care Act (ACA) the maximum annual out-of-pocket cost for health care is $6,850.00 for an individual. My insurance company is moving my factor […]


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