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Dear Addy: Step Therapy 2

August 21, 2017

Dear Addy, My insurance company is trying to make me go through step therapy to get access to the treatment product I need! Are they practicing medicine without a license and is it illegal? Sincerely, Feeling Pressured Dear Pressured, There is no clear legal answer to your question: is an insurer “practicing medicine without a […]

Dear Addy: Joint Replacement Surgery

July 25, 2016

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

Infusing Love: Blessed to Have Treatment

April 15, 2015

I sometimes forget how fortunate we are to live in the United States. When Max was younger, we had all the typical issues a child with hemophilia has: excessive bruising, bloody noses, and joint bleeds. I struggled to maintain health insurance, and as he aged, I struggled with navigating his infusions. As we attended more […]

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 […]

My Journey: Determined to Heal

December 9, 2014

For women carrying the hemophilia gene, getting a proper diagnosis is not easy. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Many women report that medical professionals are still under the assumption that a bleeding disorder can only affect males. It is these challenges that can make […]

FDA Hosts Patient-Focused Meeting

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 […]

Leveling with the FDA About Hemophilia Inhibitors

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 […]

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 […]

Adult Male Disccuses Pain Management and Treatment with FDA

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 […]

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

On Monday, September 22,  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 […]

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. […]

Hemophilia Patients Urge NIH & IRB To Stop Ineffective Hepatitis C Trial

April 22, 2014

Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB) and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir).  People with Bleeding Disorders feel that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]

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 […]

A World Away; But That’s Not So Far

April 17, 2013

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.  There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

A Situation, Mark Antell

July 30, 2011

Just a few decades ago, hemophilia did not just mean you had a bleeding disorder. It also meant that you were at high risk of being infected with blood-borne illnesses. Mark Antell knows this well. He received Hepatitis C through a blood transfusion sometime in the 60s or 70s. And the AIDS crisis of the […]

Any Port In A Storm

December 19, 2009

The Cleghorn family shares their story of having a young child with hemophilia.  They talk about prophylaxis treatment and transitioning from a portacath to to a vein.


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