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 […]

HFA Interns Tour MD Plasma Center

July 31, 2014

Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the multi-step testing and purification process to ensure its safety and efficiency. ______________________________________ 1) Was this your first time visiting a plasma center? What did you expect it to be like? Lewis: This was my first time visiting a plasma […]

FDA Approves NovoSeven® RT for Glanzmann’s Thrombasthenia

July 8, 2014

On July 7, 2014, the US Food and Drug Administration (FDA) approved NovoSeven® RT, a recombinant factor VIIa product manufactured by NovoNordisk, as the first recombinant treatment for Glanzmann’s Thrombasthenia (GT). The approved indication is for bleeding episodes and perioperative management for patients in whom platelet transfusions, with or without antibodies to platelets, is ineffective. […]

Dear Addy: Veteran’s Health Care

July 7, 2014

Dear Addy, Will the ACA [Affordable Care Act] affect military insurance for active duty and retirees? Signed, A Curious Veteran ___________________________ Dear Veteran, The ACA will not affect active duty military or veterans who are enrolled in either TRICARE or the Veteran’s health care program. If you are not enrolled in TRICARE or the Veteran’s […]

Bayer to Develop Hemophilia Gene Therapy Treatment

June 23, 2014

Dimension Therapeutics, a Cambridge biotechnology startup, has struck a deal worth up to $252 million with the pharmaceutical giant Bayer HealthCare to develop a gene therapy to treat hemophilia, a rare disease that prevents blood from clotting. The goal of the prospective treatment, which is not yet in clinical trials, is to repair a faulty […]

Dear Addy: Lifetime Caps vs. Annual Caps

April 20, 2014

                Dear Addy, I know “Obamacare” eliminated lifetime caps on January 1, 2014, but are there still annual caps on healthcare costs? Capped-Out __________________________________ Dear Capped-Out, Happily the answer is no, as of January 1, 2014. Actually, it was on September 23, 2010, that the Affordable Care Act […]

Reuters: Biogen Idec Hemophilia Drug Prices On Par With Older Therapies

April 18, 2014

Reuters – Biogen Idec Inc is pricing its newly approved long-acting hemophilia drug, Alprolix, to cost U.S. patients, and insurers, about the same per year as older, less convenient therapies whose price can reach about $300,000 annually. The move could pressure rivals such as Pfizer Inc to lower prices for existing hemophilia treatments, which provide […]

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

Thousands of Families Observe World Hemophilia Day

April 17, 2014

Today (April 17th),  tens of thousands of families across our nation and around the world will recognize World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,” said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). “Worldwide, 1 in 1,000 […]

Mid-Late 1960’s: Hemophilia Treatment

March 14, 2014

Title: Hemophiliac Lifespans Grow By: Ellen Hale Date: Unknown Source: Gannett News Service New medical advances are letting people with hemophilia live longer and better than ever before, researchers say. But the success with the “bleeder’s disease” has brought on new problems few of them foresaw. Suddenly, they are finding they must treat not only the disease, but […]

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