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New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

December 3, 2015

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]

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 […]

New Study Open To Hemophilia B Community

September 24, 2015

Novo Nordisk, along with the Coalition for Hemophilia B, Hemophilia Federation of America, and National Hemophilia Foundation have announced the B-HERO-S (Bridging Hemophilia Experiences Results and Opportunities into Solutions) study open to all patients with hemophilia B and the caregivers of children with hemophilia B. About the Study Building on the success of the original […]

FDA Approves Fast Track Designation for New Hemophilia B Treatment

September 18, 2015

Note: This is an edited form of a press release from Dimension Therapeutics, Inc. To read the original release in its entirety, click here. Dimension Therapeutics, Inc. announced on Thursday, September 17 that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for the company’s lead product candidate, DTX101, for the treatment of […]

2015 Summer Intern Recap

August 7, 2015

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew 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, Adam and Matthew: Gained […]

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 […]

FDA Accepts CSL Behring’s Application for New Hemophilia Treatment

July 28, 2015

Note: The below is an edited press release from CSL Behring. To read the full release, click here. CSL Behring announced that the U.S. Food and Drug Administration has accepted for review the company’s Biologics License Application (BLA) for its novel investigational recombinant factor VIII single-chain (rVIII-SingleChain) for the treatment of hemophilia A. In the […]

HFA Interns Tour Maryland Plasma Center

July 24, 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. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

FDA Grants Orphan Status for New Inhibitor Treatment

July 2, 2015

Below is from a press release Apitope sent out on June 9, 2015. To read it in its entirety, click here. Apitope, the drug discovery and development company focused on disease-modifying treatments that reinstate immune tolerance, announced today that pre-clinical product candidate ATX-F8-117 has been granted Orphan Drug Status by the US Food and Drug […]

Cycling 4,000 Miles for Hemophilia Awareness

June 19, 2015

Note: This story originally appeared on PRWeb. Barry Haarde is a participant in HFA’s annual Gears for Good ride from West Virginia to Washington, DC. Cyclist Barry Haarde is on a mission to raise awareness about hemophilia and encourage individuals to support needy hemophilic children through Save One Life, which supports more than 1,200 individuals with […]

How a Second Grader with Hemophilia Copes with Pain

June 9, 2015

Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family’s experiences with HFA with hopes that other families can learn from their experiences. How did you find […]

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: Fundraising

June 1, 2015

Dear Addy, I really want to be able to help raise awareness of, and funds for the bleeding disorders community. I don’t know what I could do to get people to donate. Please help me! Signed, HemoProud Dear Proud, The best way to raise bleeding disorders awareness, and in turn raise funds to support HFA […]

My Journey with Pain

May 19, 2015

Pain is a very personal experience. Everyone has their own definitions, feelings, and memories associated with pain. Some pain is greater than others. Some pain paralyzes you, and some pain motivates you. How someone chooses to define and cope with pain is molded by his/her experiences throughout a lifetime. Below is a story of one […]

FDA Making Progress With Blood Safety Monitoring System

May 15, 2015

Last December, Food and Drug Administration (FDA) Commissioner Margaret A. Hamburg  set forth a recommendation to change the current blood donation policy for men who have sex with men (MSM). The old policy, set forth in the height of the AIDS crisis of the 1980s, barred men who have had sex with men since 1977 from donating blood. […]

Women Are Not Just Carriers

May 12, 2015

While some women experience bleeding symptoms monthly or even more frequently, other women may go years before bleeding issues are recognized, making a diagnosis even more difficult. Jennifer was a hemophilia carrier for 33 years before she had her first bleed. She shares the emotional and physical pain she endured as she struggled to get […]

Dear Addy: Step Therapy

May 5, 2015

Dear Addy, I heard that my friend on Medicaid is being forced to try step therapy and use one product for three months before going back to the product he likes. Is this going to happen more often? Signed, Product Paranoid Dear Paranoid, It is possible. Step therapy is a process managed care insurers use […]

New Study Deems Long Lasting Anti-Hemophilia Factor Safe in Kids

April 27, 2015

Note: This press release was originally published by Children’s Hospital Los Angeles. To read the original post, please click here. ____________________ Children with hemophilia A require three to four infusions each week to prevent bleeding episodes, chronic pain and joint damage. The effect on quality of life can be significant, due to time and discomfort […]

Gilead’s $1,000 HCV Pill Is Hard for States to Swallow

April 8, 2015

Note: This story was originally published by Joseph Walker, Wall Street Journal reporter, on April 8, 2015. To see the original post, click here. ____________________ A pricey pill made by Gilead Sciences Inc. caused Medicaid spending on hepatitis C treatments to soar last year, even as most states restricted access to the drug, leaving many low-income patients untreated. State […]

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 […]

Kedrion Announces Safer Manufacture Process for Koate Antihemophilic Factor

April 6, 2015

Note: This is an edited version of a Kedrion press release. To read the full release, click here.  ____________________ Kedrion Biopharma proudly announced that Koate® Double Viral Inactivation (DVI) Antihemophilic Factor (human) is now being manufactured using a process that further enhances the safety and purity of that product. Koate-DVI is used in the treatment […]

ABC’s Secrets and Lies Dishonors Hemophilia Patients

March 17, 2015

ABC’s Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition “nasty byproduct of incest.” WASHINGTON, DC — The Hemophilia Federation of America (HFA) was appalled to learn that the American Broadcasting Company (ABC) show Secrets and Lies referred to hemophilia as a “nasty byproduct of incest” in the episode “The Sister” (S01, E04) that […]

Baxter Sees Promising Results in Inhibitor Treatment Trial

March 13, 2015

Baxter International Inc. announced positive results from its Phase III clinical trial evaluating the safety and efficacy of BAX 817, an investigational recombinant factor VIIa (rFVIIa) treatment for people with Hemophilia A or B who develop inhibitors. The prospective, open-label, randomized, multicenter trial was designed to assess the safety and efficacy of BAX 817 in […]

New Gene Therapy For Hemophilia Shows Potential As Safe Treatment

March 12, 2015

Research showed that bleeding events were drastically decreased in animals with Hemophilia B. Using a viral vector to swap out faulty genes proved safe and could be used for the more common Hemophilia A. _______________________________ A multi-year, ongoing study suggests that a new kind of gene therapy for Hemophilia B could be safe and effective […]

FDA Accepts Bayer’s Application for New Hemophilia Treatment

March 6, 2015

Bayer HealthCare announced that the U.S. Food and Drug Administration (FDA) has accepted the company’s Biologics License Application (BLA) for BAY 81-8973, a recombinant Factor VIII compound. Bayer is seeking FDA approval of the investigational compound, proposed trade name Kovaltry™, for the treatment of hemophilia A in children and adults. “Bayer is committed to continually […]

Biogen Idec and Sobi See Progress in Pediatric Hemophilia B Study

February 27, 2015

This is an edited version of a press release from Biogen Idec. To read the full release, please click here. ____________________ Biogen Idec  and Swedish Orphan Biovitrum AB announced positive top-line results of the Kids B-LONG Phase 3 clinical study that evaluated the safety, efficacy and pharmacokinetics of ALPROLIX® [Coagulation Factor IX (Recombinant), Fc Fusion Protein] in children under […]

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 […]

Baxter Reports Data from Extended Half-Life Study

February 13, 2015

Baxter International Inc. presented additional efficacy and safety data from the Phase III pivotal study of BAX 855, an investigational, extended half-life recombinant factor VIII (rFVIII) treatment for hemophilia A based on ADVATE [Antihemophilic Factor (Recombinant)] at the 8th Annual Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) in Helsinki, Finland. The […]

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 […]

FDA To Review CSL Behring’s New Long-Lasting Hemophilia B Product

February 4, 2015

CSL Behring announced that the U.S. Food and Drug Administration (FDA) has accepted for review its Biologics License Application (BLA) for the marketing authorization of its long-acting fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP). Upon FDA approval, rIX-FP will provide hemophilia B patients with a long-acting treatment option with dosing intervals up […]


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