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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 […]

My Dad: As Seen By A Hemo Mom & Daughter

June 21, 2015

    I wish I could run on the beach with my Dad. This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.  As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.  […]

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 […]

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 […]

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 […]

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. […]

5 Walking Strategies for Fitness Success

May 14, 2015

May is National Physical Fitness and Sports month!  It is also a great time of year to get back into or start a fitness routine.  Walking is a great form of exercise for those with bleeding disorders. Nearly everyone can do it, with very little to no cost or special equipment.  The Arthritis Foundation agrees that […]

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 […]

Dear Addy: Deductibles

May 4, 2015

Dear Addy, I thought I hit my deductible total recently based on my receipts and explanation of benefits. My insurer says I haven’t and they have a different total of how much of my deductible is left. What is going on?  Signed,  Calculation Crazed ____________________ Dear Crazed, You will need to check your health insurance […]

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 […]

You’re Never Too Old

April 17, 2015

Let’s face it, we are all getting older.  People with hemophilia who have access to factor replacement therapy now have a normal life expectancy and are having to deal with the issues of aging.  One of the most important things we can do for ourselves is to stay physically active.  For individuals with hemophilia or […]

CSL Behring Renews Pledge to World Federation of Hemophilia

April 15, 2015

  In recognition of World Hemophilia Day April 17, the World Federation of Hemophilia (WFH) and CSL Behring announced today that CSL Behring has once again committed to donating bleeding disorder protein therapy international units (IUs) to the WFH Global Alliance for Progress (GAP) Program and other WFH programs, as well as making significant financial […]

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 […]

Five New Developments in Hemophilia

April 7, 2015

This post first appeared on Vector, a blog of Boston Children’s Hospital an was written by Ellis Neufeld, MD, PhD, a hematologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.   ________________________________________________ From new longer-acting drugs to promising gene therapy trials, much is changing in the treatment of hemophilia, the inherited bleeding disorder in which the blood does not clot. […]

Inhibitor Patients Have Increased Risk for Joint Disease & Other Complications

April 3, 2015

Note: The below email was sent by the Centers Disease Control and Prevention (CDC) on April 3, 2015: People with hemophilia lack a protein (a clotting factor) necessary for blood to clot normally. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. The best way to treat hemophilia is to replace the […]

Infusing Love: Not “Just a Mom”

April 1, 2015

The candidates for the HFA Board of Directors Executive Committee were asked to record a short video to share rather than a written resume this year. I thought it was a great idea until I realized that I had to do it too.  I totally dragged my feet for a few weeks until I reached […]

Radio Interview: HFA on The Carney Show 550 AM, St. Louis

April 1, 2015

On Saturday, March 28, 2015, Rich Pezzillo, HFA’s Communication Director, talked on St. Louis’ The Carney Show 550AM, about the ABC Secrets and Lies comment, the importance of Symposium, updates about the work being down around specialty tiers on a local and national level, and how HFA and Gateway Hemophilia Association are raising awareness about bleeding disorders.

Reuters: Britain’s Prime Minster Apologizes For Infected Blood In 70s, 80s

March 27, 2015

British Prime Minister David Cameron apologized on Wednesday, March 26, 2015 to thousands of people who were infected with HIV and Hepatitis C after being treated for unrelated conditions with contaminated blood in the 1970s and 1980s. Survivors and relatives of people who died after being infected through blood therapies or transfusions have campaigned for […]

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 […]

Infusing Love: A True Black & Blue Sensation

March 4, 2015

While the rest of the world is debating whether a dress is black and blue or gold and white, one thing I know for certain is that my son, Thomas, has been black and blue many times over the last eleven years. Do you think the world understands why? You might remember HFA’s Hemophilia Awareness […]

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 […]

Escaping Winter Weather? Take Your Workout with You!

February 26, 2015

Ready to ditch the ice and snow for warmer temperatures, a sandy beach and some sun?   While it is easy to sit back and relax on vacation, it is also very important to keep up your fitness routine.  Schedules relax while traveling and we tend to over indulge in things that may cause us to […]

Infusing Love: A Life Never Imagined

February 25, 2015

Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I’m preparing to do it again.” Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.  For most of my life, I […]

Acquired Hemophilia A Successfully Treated with Rituximab

February 25, 2015

The following is an abstract from the March issue of the Mediterranean Journal of Hematology and Infectious Diseases. To read the full article, click here. _____________ Acquired hemophilia A (AHA) is a rare bleeding disorder due to the development of specific autoantibodies against factor VIII. The anti-CD20 monoclonal antibody Rituximab has been proven to be effective […]


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