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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 […]

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 […]

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 […]

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 […]

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 […]

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. […]

Dear Addy: Specialty Pharmacy vs. PBM

January 12, 2015

Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as 鈥溾istinct from traditional pharmacies in coordinating many aspects of patient care […]

Infusing Love: Hemophilia is the Easy Part

January 7, 2015

鈥淗emophilia is the easy part.鈥 I realized that both my son and I have said this recently.聽 There are many physical and emotional issues that we both face stemming from Max鈥檚 hemophilia, but the actual condition is not one of them. I鈥檒l say it again: 鈥淗emophilia is the easy part.鈥 I鈥檓 not even sure when […]

Dear Addy: New Year, New Goals

December 29, 2014

Dear Addy, My company is having a New Year鈥檚 Resolution exercise drive in 2015. I want to participate like everyone else, but with my hemophilia I have limitations and joining a gym is expensive. What can I do to get involved and exercise like everyone else? 聽Signed, 聽Ben, Adult Male with Hemophilia B   ________________________________________________ […]

Infusing Love: What We’re Truly Thankful For

December 24, 2014

Late this September, during the HFA Gears for Good Charity Bike Ride, I had one of those conversations in life you remember forever. It was with my son鈥檚 best friend, Aidan. About three years ago in elementary school, Benny, our now 12 year old with severe hemophilia, befriended a classmate who had just moved to […]

Baxter Files For FDA Approval of Recombinant Treatment For von Willebrand Disease

December 22, 2014

Baxter International Inc. today announced that the company has submitted a biologics license application (BLA) to the United States (U.S.) Food and Drug Administration (FDA) for the approval of BAX111, the first highly-purified recombinant von Willebrand Factor (rVWF) in clinical development as a treatment for patients with von Willebrand disease, the most common type of […]

Dear Addy: Holiday Travel

December 15, 2014

  Dear Addy, 鈥淢y family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son鈥檚 bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]

Dads in Action Spotlight: Hemophilia Foundation of Northern California

December 15, 2014

[glossary_exclude] The recent addition of Dads in Action (DIA) to the Hemophilia Foundation of Northern California (HFNC) has been instrumental in encouraging our dads to connect, participate and learn from each other. While we worried how successful we would be (Would dads who didn鈥檛 know each other open up, share, or even show?!), we were […]

Baxter Seeks OK to Sell New Hemophilia Drug

December 4, 2014

Baxter International submitted an application to the Food and Drug Administration for the approval of a key hemophilia drug. The drug, BAX 855, is an extended-release version of its flagship hemophilia drug Advate, which is sold in dozens of countries. The treatment is seen as a key part of the company’s drug pipeline and its […]

A Caregivers Perspective: Hemo Wife Uncorked

November 29, 2014

[glossary_exclude] I worry when he’s late coming home and I haven’t heard from him in a while. I worry when I can’t get a hold of him on the phone for hours. I worry when he boards a plane for a trip. I worry when we do any physical activity where there’s a possibility he […]

The Silent 鈥淐arriers鈥 of Hemophilia

November 13, 2014

Women have been the silent 鈥渃arriers鈥 of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA鈥檚 Blood Sisterhood program was established […]

Dear Addy: In-Network

November 11, 2014

[glossary_exclude]   Dear Addy, I have heard from a friend that their hemophilia treatment center (HTC) is no longer 鈥渋n-network鈥 for their insurance plan but instead is 鈥渙ut-of-network.鈥 What does this mean and should I be worried about my insurance plan changing? 聽Signed, 聽Nervous Over Network _______________________ Dear Nervous, The term 鈥渙ut-of-network鈥 refers to those […]

Six Ways to Be Safe and Healthy This Halloween

October 31, 2014

This guide was put together by the聽Centers for Disease Control and Prevention (CDC), and is聽a great addition to our recent FitFactor post on聽watching how much sugar is in your food.聽We hope that you and your family stay safe this Halloween. Don鈥檛 let your health get tricked this Halloween! Here are a few ways to stay […]

Bullying: A Serious Problem for Kids with a Chronic Condition

October 9, 2014

Children with special health needs such as a bleeding disorder can be at an increased risk of being bullied because of issues like physical vulnerability, social skill challenges, and intolerant environments.聽Kids with hemophilia may become a target when they use crutches, are limited to certain activities during recess/gym classes, have a visible PICC line/port, or […]

FDA Hosts Patient-Focused Meeting

September 23, 2014

  On Monday, September 22,聽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.聽Patients and advocates of every age, every background, and with several different conditions came out […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Grifols Launches Higher Potency Alphanate

September 20, 2014

Grifols, a leader in the production of plasma-derived medicines, announces the launch of a 2000 IU/vial assay size for ALPHANATE. ALPHANATE is indicated for the control and prevention of bleeding in patients with Hemophilia A and for surgical and/or invasive procedures in adult and pediatric patients with von Willebrand disease in whom desmopressin (DDAVP) is […]

Dear Addy: Max Out-of-Pocket

September 1, 2014

Note: This article was updated on 11/10/2015 to reflect 2016 out of pocket maximum limits.   Dear Addy, I鈥檓 a confused individual with private health insurance. I read that under the Affordable Care Act (ACA) the maximum annual out-of-pocket cost for health care is $6,850.00 for an individual. My insurance company is moving my factor […]

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: Educating the Emergency Room

June 23, 2014

Dear Addy, We went out of town for vacation and I had to take my son to the ER for a bleed due. Unfortunately, none of the doctors were familiar with hemophilia. I knew more than they did. Instead of comforting my son, I spent my time educating doctors. Is there something I can do […]

Welcome New Mom Bloggers!

May 14, 2014

When I think of summer I am reminded of my childhood spent outside playing with my friends. We’d run barefoot in grass or hang out at the pool. Sometimes I long for those days and what I realize that I miss the most is the companionship of my friends. Being a mommy is isolating sometimes, […]

CSL Opens World-Class Manufacturing Facility for Hemophilia Therapies

May 9, 2014

CSL Limited (ASX:CSL), parent company of CSL Behring which is based in King of Prussia, PA, today opened the CSL Behring Biotechnology Manufacturing Facility in Melbourne, Australia. The new facility, located adjacent to the site鈥檚 manufacturing plant for plasma products, is the centerpiece of CSL鈥檚 $250 million expansion at its Broadmeadows site and will play […]


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