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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 […]

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 […]

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 […]

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   ________________________________________________ […]

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 […]

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 […]

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 […]

Dear Addy: Unaffected Siblings

October 7, 2014

Dear Addy, I have two sons with hemophilia and one daughter who is not affected by a bleeding disorder. My two sons get so much attention and I know that my daughter feels left out. How can I help my daughter understand that we love her just as much as her brothers? Signed, Dad of […]

Dear Addy: Choice in Health Care

September 30, 2014

Dear Addy, I am frustrated because my insurance company has mandated that its members use a single pharmacy provider. What can be done to stop this denial of choice? Signed, Pharmacy Frustrated< ________________________________________________ Dear Frustrated, Health insurance providers are making this change as a cost savings measure. In order to keep their costs down, and […]

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 […]

Thousands of Families Observe World Hemophilia Day

April 17, 2014

Today (April 17th), 聽tens of thousands of families across our nation and around the world will聽recognize聽World Hemophilia Day to raise awareness of bleeding disorders. 鈥淲orld Hemophilia Day brings public awareness about bleeding disorders and encourages the development of improved treatment,鈥 said Kimberly Haugstad, Executive Director of Hemophilia Federation of America (HFA). 鈥淲orldwide, 1 in 1,000 […]

CDC Webinar: New Challenges in Hemophilia

April 8, 2014

On Thursday, April 3, 2014 the Centers for Disease (CDC) control hosted an informative and important webinar about new challenges facing the hemophilia community. If you missed it, take a look at Dr. Guy Young, Director of the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles, presentation slides聽about about the impact of: overweight and […]

Healthier Bodies Bleed Less

October 25, 2013

It is important for individuals with bleeding disorders to participate in some form of physical activity.聽 Being physically active helps to strengthen one鈥檚 muscles, bones and joints.聽 One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience.聽 Many in the […]

Julie Mora, Video Created by Joe Tavarez

July 30, 2011

Julie Mora is a Spanish-speaking mother from Texas. Joe is part of HFA’s Young Leader program and created this video after a program he was a part of at Symposium!

A Woman’s Story

June 7, 2011

Click here for Lew Collins Story Thank you to Lew Collins and Matrix Health for sharing this story with HFA!

Women and Bleeding Disorders

March 11, 2011

This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.

Friendship Through Tough Times

July 8, 2010

Jill & Kathy have supported each other through the toughest of times.


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