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Advocacy News

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don鈥檛 know where to start. Help! Signed, Anxious for an A   Dear […]

Dear Addy: Mental Health

September 5, 2016

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

Update #3: Zika Virus & Blood Supply

August 27, 2016

On August 26th, the US Food and Drug Administration issued a revised guidance to US blood banks addressing Recommendations for Reducing the Risk of Zika Virus Transmission by Blood and Blood Components. The Zika virus is transmitted primarily by the Aedes mosquito; it can also be spread by sexual contact. Although 4 out of 5 […]

Dear Addy: Back to School Secondary Education

August 22, 2016

  Dear Addy, My son is starting kindergarten this fall and I鈥檓 concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]

Intern Introspective: That’s a Wrap for Cami

August 12, 2016

Intern Introspective Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric […]

Voluntary Recalls Issued for Additional Lots of Kogenate FS Recombinant Clotting Factor Product

August 11, 2016

Bayer has announced a voluntary recall of additional聽lots of Kogenate聽FS with vial adapter. This is an update to the recall that was issued on July 25, 2016.聽All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Kogenate FS 250 IU Vial Adapter 270RV8X 12/19/2017 […]

Voluntary Recalls Issued for Additional Lots of Helixate FS Recombinant Clotting Factor Product

August 11, 2016

CSL Behring has announced a voluntary recall of additional聽lots of Helixate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016.聽All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Helixate FS 250 IU 270P892 09/15/2016 […]

Update #2: Zika Virus & Blood Supply

August 10, 2016

For the past few months, HFA has been monitoring the progression of the Zika virus in the United States. Since the first reported cases of Zika virus reaching the United States in January, there have been thousands of additional cases. According to the Centers for Disease Control (CDC), the follow cases and causes of transmission […]

FDA Requests Comments Regarding MSM Donor Deferral Policy

August 10, 2016

In January of this year, the Food and Drug Administration (FDA) revised its donor deferral policy surrounding men who have sex with men (MSM). On July 26, 2016, the FDA issued another request for comments regarding the MSM donor deferral policy. Current policy permits blood donations by MSM provided that the donor has not had […]

Dear Addy: Back to School

August 8, 2016

Dear Addy, I’m preparing for my first year of college, which also means managing my hemophilia without my parents and local HTC. How do I make this a smooth transition? Is there anything I need to do before I get to school? Sincerely, Back to School Jitters ________________________________________________________________________________ Dear Jitters, Congratulations on this exciting transition. […]

Intern Introspective: That’s a Wrap for Eric

July 29, 2016

Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric and Cami […]

Dear Addy: Joint Replacement Surgery

July 25, 2016

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

Intern Introspective: A Day in the Life

July 14, 2016

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns鈥 first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.聽 ___________________________________________________________________________________________ 9 am to 10 am – Cami […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

July 14, 2016

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

Dear Addy: Advocacy in Rural Communities

July 11, 2016

Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor鈥檚 office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

Intern Introspective: Through Our Eyes

July 1, 2016

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

Update #4: MASAC Issues Recommendation on SIPPET

June 28, 2016

On June 28, 2016, the National Hemophilia Foundation’s Medical and Scientific Advisory Committee (MASAC) issued a recommendation following the published results of the聽Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET)聽The SIPPET study was published in the聽New England Journal Of Medicine (NEJM)聽in May 2016. The full text of the SIPPET study is available for a […]

Dear Addy: Legislative Day Participation and Follow-up

June 26, 2016

Dear Addy, I recently participated in a state legislative day and left feeling great about what we accomplished. How do I maintain this energy and continue to advocate for the issues I am concerned about? -Eager Advocate Dear Eager, Congratulations on participating in your state legislative day. This is an important way to advocate for […]

HFA Champion Award Given to 2 Members of Congress

June 24, 2016

On June 22, 2016, we hosted our 3rd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽and for HR 3742, The Access to Marketplace Insurance Act, other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

Intern Introspective: Introducing Camila

June 17, 2016

Two weeks ago we introduced you to one of our Policy & Government Relations intern鈥檚, Eric. This week, we are pleased to feature our second summer intern, Camila. _______________________________________________________________________ What school do you attend? What is your major? I am a rising senior at the University of Richmond in Richmond, Virginia. I am completing a […]

Dear Addy: National Safety Month

June 13, 2016

Dear Addy, My son is about to start summer vacation. While he is excited, I鈥檓 concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child鈥檚 safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]

Intern Introspective: Introducing Eric

June 3, 2016

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Eric and Camila are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

May is Hepatitis Awareness Month

May 1, 2016

In 2001, the Centers for Disease Control (CDC) and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and 1990s, thousands of people with hemophilia contracted HIV and Hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factorproducts. […]

Letter to FDA Commissioner Regarding Biosimiliar Safety & Approval Process

April 20, 2016

HFA is proud to be part of the Patients for Biologics Safety & Access (PBSA). PBSA is a coalition of 24 patient advocacy organizations dedicated to protecting patient access to safe and effective biologics. Together, this coalition represents millions of Americans who suffer from serious, life-threatening diseases that are difficult to diagnose and treat. As […]

HFA Observes February 29 As Rare Disease Day

February 23, 2016

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 29, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

Dear Addy: Pharmacy Choice

February 5, 2016

Dear Addy, Last year, my friend with hemophilia started working for a specialty pharmacy. Since then, he鈥檚 been pressuring me to switch from my current pharmacy to his. Initially, he was polite and nice, taking me to lunch and then dinner to ask for my business. Each time, I told him I am content with […]

Zika Virus and the Blood Supply

February 4, 2016

We鈥檝e recently received questions from the bleeding disorders community about the Zika Virus and the possibility of transmission via the blood supply. Zika is primarily transmitted through the bite of infected Aedes mosquitoes, the same mosquitoes that spread Chikungunya and dengue. HFA has been in contact with the Centers of Diseases and Control (CDC) and […]

FDA鈥檚 Completed Revision of MSM Donor Deferral Policy

January 28, 2016

Background The Food & Drug Administration (FDA) is responsible for recommending policies and making rules regarding the donation of blood and blood products. During the 1980s, when it became clear that transmission of Acquired Immune Deficiency Syndrome (AIDS) happened through blood, the FDA began recommending multiple policies that would decrease the risk of transmission of […]

Dear Addy: Why Are Medical Alert IDs Important?

January 15, 2016

Dear Addy, Several parents that I鈥檝e met at the HTC have recommended I should get my daughter a medical ID bracelet. Why is this so important? Are there resources available to help me get her one? Signed Inquiring About IDs Dear Inquiring, For patients with serious medical conditions like a bleeding disorder, it鈥檚 important that […]

Health Plans鈥 Coverage Of Some Drugs Can Be A Source Of Consumer Confusion

December 21, 2015

Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don鈥檛 appear to be covered. 鈥淧eople think, 鈥楯eez, what do I do now?鈥欌 said Anna Howard, policy principal at the American […]


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