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Dear Addy: New Years Resolution

December 26, 2016

Dear Addy, My new year鈥檚 resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

Dear Addy: Giving Back

December 12, 2016

Dear Addy, I want to give back this holiday season, but I鈥檓 not sure how. Can you recommend ways to be more involved in my community? Signed, Inspired to Serve _____________________________________________________________________________________________________________________________________________________________ Dear Inspired, The holiday season is a good time to reflect on giving to a cause or serving those in need. There are many […]

Dear Addy: Formularies

November 28, 2016

Dear Addy, I keep hearing the terms formulary and preferred drug list. What do they mean and should I be worried if my current insurance plan has one? What about my friends that have Medicaid? Signed, Informed Consumer ____________________________________________________________________________________ Dear Consumer, A formulary is a list of prescriptions drugs that are covered by a particular […]

Dear Addy: Open Enrollment for New Users

November 14, 2016

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber _____________________________________________________________________________________ Dear Subscriber, First, an聽Open Enrollment Period聽is the time during the year when health insurance companies or聽HMOs (health maintenance organizations)聽are required by law to […]

We Are Always Here For You

November 9, 2016

Dear Advocate: After yesterday’s election, there are many questions for the bleeding disorders community. While we don’t have all of the answers, we understand the concerns many have. No matter what your politics are, know that HFA is there for YOU — the bleeding disorders community.聽We offer you our reassurance that we will continue to […]

Dear Addy: Joint Health

October 31, 2016

  Dear Addy, I鈥檓 27 years old with severe hemophilia B. I鈥檓 caring for myself and my joints, including infusing to prevent bleeds as much as possible. As you know, with time, joints just can鈥檛 move as freely. Is there anything I can do? Do you recommend any exercises that can improve movement? Signed, Achy […]

Dear Addy: Project CALLS

October 17, 2016

Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]

Dear Addy: Carrier Testing

October 3, 2016

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

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 […]


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