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FDA Making Progress With Blood Safety Monitoring System

May 15, 2015

Last December,聽Food and Drug Administration (FDA)聽Commissioner Margaret A. Hamburg 聽set forth a recommendation to聽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 […]

You’re Never Too Old

April 17, 2015

Let鈥檚 face it, we are all getting older.聽 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.聽 One of the most important things we can do for ourselves is to stay physically active.聽 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鈥檚 $1,000 HCV Pill Is Hard for States to Swallow

April 8, 2015

Note: This story was originally published by Joseph Walker,聽Wall Street Journal reporter, on April 8, 2015. To see the original post, click here. ____________________ A pricey pill made by聽Gilead Sciences聽Inc.聽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.聽 ____________________ Kedrion Biopharma proudly announced that Koate庐 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 […]

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聽hemophilia聽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 […]

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’聽The Carney Show聽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聽are raising awareness about bleeding disorders.

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 […]

Infusing Love: Tough Questions to Answer

March 11, 2015

I was starting to get Ryan, my youngest, ready for bed while Logan hovered around us. Logan loves Ryan, and wants to be near him always. It is incredibly sweet. But on this particular day Logan was paying close attention to Ryan, and after a few moments Logan casually asked, 鈥淲hen does Baby Ryan get […]

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鈩, 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鈥檚 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聽click here. ____________________ Biogen Idec聽 and聽Swedish Orphan Biovitrum聽AB announced positive top-line results of the Kids B-LONG Phase 3 clinical study that evaluated the safety, efficacy and pharmacokinetics of ALPROLIX庐聽[Coagulation Factor IX (Recombinant), Fc Fusion Protein] in children under […]

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鈥檓 preparing to do it again.鈥 Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.聽 For most of my life, I […]

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 […]

Walgreens Infusion Services Becoming a Private Independent Company

February 19, 2015

  Walgreen Co., a wholly owned subsidiary of Walgreens Boots Alliance, Inc. announced on January 20, 2015 that it has signed a definitive agreement with Madison Dearborn Partners (MDP), a leading private equity firm based in Chicago, under which MDP will acquire a majority interest in Walgreens Infusion Services. With more than 30 years of […]

Infusing Love: An Unexpected Haven

February 18, 2015

I鈥檇 be lying if I said my nerves weren’t through the roof upon entering the gates to the Taylor Family Foundation鈥檚 Camp Arroyo. To say that going to a family camp took me out of my element would be an understatement. I had no idea what I was getting myself into or what to expect. […]

Living Fit With von Willebrand Disease

February 13, 2015

One of the most common bleeding disorders in women is von Willebrand Disease (vWD), which occurs in about 1% of the US population. Heavy bleeding is one of the most common problems women report to their doctors. It affects more than 10 million American women each year. This means that about one out of every […]

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鈥檓 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 […]

Octapharma Launches Co-Pay Assistance Program

February 6, 2015

Octapharma USA announced on聽January 27, 2015 information about a new financial support program for the bleeding disorders community. The Octapharma Co- Pay Assistance Program is available to von Willebrand鈥檚 Disease (VWD) patients who are currently receiving wilate庐 [von Willebrand Factor/Coagulation Factor VIII Complex (Human)] or have a prescription to begin therapy. The new program offers […]

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

February 4, 2015

CSL Behring聽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 […]

FDA Accepts CSL Behring’s Application for New Long-Acting Hemophilia B Product

February 4, 2015

This is an edited version of a press release from CSL Behring. To read the full release, please聽click here. ____________________ 聽CSL Behring聽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 […]

Project RED: The Sequel

February 3, 2015

NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]

Dear Addy: Out-Of-Pocket Maximums

January 28, 2015

Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]

CDC Webinar: Reproductive Issues in Women with Bleeding Disorders

January 28, 2015

On Thursday, January 22, 2015, the聽CDC聽hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by聽Andra H. James, MD. Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. […]


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