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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. We offer you our reassurance that we will continue to […]

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 […]

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 […]

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 […]

Zika Virus and the Blood Supply

February 4, 2016

We’ve 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’s 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 […]

HFA Interns Tour Maryland Plasma Center

July 24, 2015

Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Last week, Matthew and Adam had the opportunity to tour Grifol’s plasma collection center in Frederick, MD. Centers like this collected plasma from donors, returning the […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

New Study Deems Long Lasting Anti-Hemophilia Factor Safe in Kids

April 27, 2015

Note: This press release was originally published by Children’s Hospital Los Angeles. To read the original post, please click here. ____________________ Children with hemophilia A require three to four infusions each week to prevent bleeding episodes, chronic pain and joint damage. The effect on quality of life can be significant, due to time and discomfort […]

FDA Makes Statement on MSM Blood Donor Deferral Policy

December 23, 2014

Today, Commissioner Margaret A. Hamburg of the Food and Drug Administration (FDA) set forth a recommendation to change the current MSM blood donation policy. The current policy, set forth in the height of the AIDS crisis of the 1980s, forbade men who have had sex with men since 1977 from donating blood. The new policy […]

HFA’s Statement to the FDA’s BPAC on Blood Donation Policy

December 3, 2014

Former HFA Board President Paul Brayshaw recently delivered a statement on behalf of our organization before the Food and Drug Administration’s Blood Product Advisory Committee (BPAC) regarding a proposed change to the policy on blood donations from men who have sexual contact with men. In this statement, Mr. Brayshaw stated that, while we do not support […]

Promising Gene Therapy Results in Treating Hemophilia B

November 20, 2014

On November 19, St. Jude Children’s Research Hospital announced the results of their ongoing gene therapy partnership with University College London and the Royal Free Hospital. The report indicates success in the trial, which used a modified adeno associated virus (AAV) 8 to deliver genetic material for making Factor IX in Hemophilia B patients. In […]

Update #2: FDA will Review Study Suggesting Higher Inhibitor Incidence in PUPS

November 20, 2014

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using Kogenate/Helixate. The Food and Drug Administration (FDA) and European Medicines Agency (EMA) have […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

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

FDA Hosts Patient-Focused Meeting

September 23, 2014

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

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

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

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

September 23, 2014

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

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

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

Adult Man Shares Seven Decades of Hemophilia Treatment with the FDA

September 23, 2014

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

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

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

HFA Interns Tour MD Plasma Center

July 31, 2014

Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the multi-step testing and purification process to ensure its safety and efficiency. ______________________________________ 1) Was this your first time visiting a plasma center? What did you expect it to be like? Lewis: This was my first time visiting a plasma […]

HFA ‘Champion Award’ Given to 4 Members of Congress

June 19, 2014

On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Dear Addy: Finding The Right Hematologist

June 9, 2014

Dear Addy, What skills and experience should I look for in a hematologist? My son was recently diagnosed with hemophilia and I’m willing to move to another city, so my son can get the best care possible. Signed, Diligent Patient _____________________ Dear Diligent, Most importantly you want to make sure that all of the hematologists […]

‘Blood Transfusion’ Publication Releases Special Edition

May 22, 2014

Blood Transfusion, a quarterly print and online publication of the Italian Society on Transfusion Medicine and Immunohaematology (SIMTI), released a special edition at the WFH World Congress in Melbourne entitled “Haemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America”.  This report supplement reviews current efforts in […]

CMS Explanation in Response to PSI Letter to HHS Secretary

February 26, 2014

In response to letters by Patient Services Incorporated (PSI) and other patient advocacy groups, CMS has released a further explanation on the November 4, 2013, Frequently Asked Question (FAQ) document. As you will remember, CMS called into question the use of premium assistance, the FAQ stated: The Department of Health and Human Services (HHS) has […]

FDA Issues Positive Review for Gilead’s Hep C Drug

October 23, 2013

By Matthew Perrone, AP Health Writer Associated Press -The Food and Drug Administration issued a positive review Wednesday for a highly anticipated hepatitis C drug from Gilead Sciences, saying the pill cures more patients in less time than currently available treatments. The agency posted its review of Gilead’s sofosbuvir online ahead of a meeting Friday where […]

Maine to Allow Prescription-Drug Imports

October 9, 2013

AUGUSTA, Maine (Wall Street Journal) — The hunt for cheaper prescription drugs long has led consumers to reach beyond U.S. borders, but under a Maine law set to take effect Wednesday, their search now will have the state’s blessing. The law, the first of its kind, sanctions the direct purchase of mail-order drugs from some […]

A Situation, Mark Antell

July 30, 2011

Just a few decades ago, hemophilia did not just mean you had a bleeding disorder. It also meant that you were at high risk of being infected with blood-borne illnesses. Mark Antell knows this well. He received Hepatitis C through a blood transfusion sometime in the 60s or 70s. And the AIDS crisis of the […]

Raising a Family with Hemophilia

April 21, 2010

Chuck and Vicki talk about their family life with hemophilia.


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