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Infusing Love: My Mom, The Super Hero

May 10, 2015

As a hemophiliac there are many things I am grateful for that most “normal” kids just don’t get like the amazing bonds with my blood brothers and their families during conferences and at camp. However, what I am by far most grateful for is my mother. After dealing with all the challenges related to hemophilia, […]

Infusing Love: Staying Connected

May 6, 2015

I was recently asked about being a single mom and, more specifically, whom I consider my support system.聽 I have no family living in the state of Mississippi with me.聽 My closest family members are actually four hours away.聽 I鈥檝e been here a couple years now, and my son Micah and I just love this […]

Recognizing National Nurses Week

May 6, 2015

Nurses play a fundamental and vital role in the lives of patients living with a bleeding disorder. Day after day they help to manage and run our important Hemophilia Treatment Centers (HTCs), answers phone calls in the middle of the night, teach children how to self-infuse at summer camp, and give unconditional support and compassion […]

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 […]

Infusing Love: An Advocacy Choir

April 22, 2015

Earlier this month, Jackson and I attended the Ohio Statehouse Days hosted by the Ohio Bleeding Disorder Council. This was a time for families and individuals with bleeding disorders to meet with their senators and representatives to talk about issues and legislation that is vital to our community. This is the third year that we […]

Dear Addy: Is It Safe To Get A Tattoo With Hemophilia?

April 20, 2015

  Dear Addy, I want to get a tattoo, but am worried that my hemophilia will complicate things. Is this safe? Signed, Un-Inked ________ Dear Un-Inked, This is a subject that you and your hematologist need to discuss. Here are some questions to ask your hematologist: Safety鈥擨s it safe for someone with hemophilia to get […]

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 […]

Infusing Love: The Brother I Never Knew

April 8, 2015

I have always felt my brother’s presence in my life.聽 He was born in May of 1962.聽 There are no pictures of him or any stories about him.聽 He only lived for five days.聽 I was born, 6 years later, in October of 1968. I remember going to the cemetery to visit the family graves […]

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

CDC Research Study: Female Hemophilia Carriers Have Joint Abnormalities

March 31, 2015

Research has suggested that women who are carriers for hemophilia (see definition in box聽below) might have an increased tendency to bleed. Repeat bleeding into the joint can lead to persistent joint swelling, ultimately leading to limited joint movement, and reduced joint range of motion.聽Given that there is an under-appreciation of the effects of being a […]

Spring Training: Time To Get Off The Couch

March 19, 2015

Spring is the time for new opportunities. Days are getting longer, trees are budding, and those cool breezes are finally turning warm. Spring is an opportunity to revitalize ourselves and get back into action after winter鈥檚 long hibernation. With more opportunities for exercise and outdoor activity, spring is a great time to get off the […]

Infusing Love: Thanks ABC!

March 18, 2015

Wow – what a difference a day makes!聽 Yesterday our community was outraged by a careless remark made on the ABC television drama, 鈥淪ecrets and Lies鈥 which aired on Sunday, March 15th.聽 I, along with thousands of others, voiced my concern in a variety of ways 鈥 social media, emails, and good old fashioned talking. […]

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 […]

Acquired Hemophilia A Successfully Treated with Rituximab

February 25, 2015

The following is an abstract from the March issue of the聽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 […]

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 […]

HFA Partnering With NORD For Rare Disease Day and Hemophilia Awareness Month

February 12, 2015

In a couple of weeks, the bleeding disorders community will be recognizing聽Rare Disease Day聽on February 28,聽Hemophilia Awareness Month聽during the entire month of March, and聽World Hemophilia Day聽on April 17. These important dates were created to help raise awareness about rare conditions like hemophilia and other bleeding disorders. This year, we are thrilled to partner with the聽National […]

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 […]

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 […]

Infusing Love: Discipline, Divorce, & Dating

February 4, 2015

Oh February, the month of love for those who have someone, or the month of single awareness for those who don鈥檛.聽 I fall into the single category. I鈥檝e been reevaluating some things as to why I am single; reviewing the lessons I鈥檝e learned of being a single mom of a child with hemophilia. I鈥檓 45 […]

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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