Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Bioverativ聽joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year鈥檚 theme, 鈥淗ear Their Voices.鈥 Excerpted from the press release: 鈥淏ioverativ shares the World Federation of Hemophilia鈥檚 commitment to understanding the needs of all members of the bleeding disorders community, including […]
The following is the full statement from Genentech/Roche regarding the recent death of a 41-year-old hemophilia with inhibitors patient who was participating in the HAVEN 1 study. Dear members of the Haemophilia community, At Roche, we respect and value the close relationships that exist within the haemophilia community. We also understand the important role patient […]
Note: The following is an abridged聽form of an article from the聽Centers for Disease Control and Prevention(CDC). The original full-length of the article聽can be read聽here. The Centers for Disease Control and Prevention (CDC), along with researchers from聽the聽Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]
The following is excerpted from an FDA news release. To read the release in its entirety, click聽here. The U.S. Food and Drug Administration is warning about the risk that some of the new direct-acting antiviral medicines for hepatitis C (HCV) can reactivate the hepatitis B virus (HBV) among patients who have had HBV. 鈥淚n a […]
A recent article in Blood, a publication of the American Society of Hematology, examines thirteen years of surveillance data collected by the Centers for Disease Control and Prevention regarding patient outcomes for men with severe hemophilia. Among the key points: Prospectively collected data on demographics, complications, and mortality are described for 4899 US men with […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
On May 26 2016, the聽New England Journal Of Medicine (NEJM)聽published the results of the聽Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET)聽study. Investigators found that in a randomized study, when previously-untreated patients (PUPs) were treated with recombinant factor VIII, there was an 87% higher incidence of inhibitor development than when treated with plasma-derived factor VIII. […]
Note:聽Scientific Reports聽released an article outlining the results of a study聽by researchers at Temple University offers promising new advancements toward a cure for HIV. 聽Using specialized gene-editing, 聽researchers were able to聽effectively and safely聽eliminate HIV-1 from the DNA of human T-cells. This study is especially promising in that there appear to be very little to no side […]
Note: The New England Journal of Medicine released an article outlining the results of a study of a new drug,聽Emicizumab (ACE910, Chugai Pharmaceuticals), that shows reduced bleeding in patients with severe hemophilia A. Read the full article,聽Factor VIII鈥揗imetic Function of Humanized Bispecific Antibody in Hemophilia A, in the New England Journal of Medicine. This video […]
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 […]
Note: The following is an edited form of a press release from the University of North Carolina School of Medicine. The original release can be read聽here. A single injection. That鈥檚 all someone with a factor VII deficiency would need for a life-long cure, thanks to a new gene therapy treatment developed in a collaboration of […]
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 […]
This past weekend, the聽American Society of Hematology (ASH), a worldwide organization of 15,000+ medical and scientific experts on blood diseases,聽held their 57th Annual Meeting to discuss new treatments and research methods. During this meeting, a group of doctors from around the globe presented the findings of the Survey of Inhibitors in Plasma-Product Exposed Toddlers (SIPPET). […]
Note: The following originally appeared on MDMagazine.com. New research further supports the understanding that patients with hemophilia suffer from pain and mobility issues, and it went on to uncover which joints are most greatly affected by the condition. Christine Kempton, MD, MSc, from Emory University in Georgia, and colleagues used multiple strategies to find how […]
The American Society of Hemophilia (ASH) released information about their upcoming 57th ASH Annual Meeting, which will be held December 5-8, 2015 in Orlando, Florida. Included in the program information is a paper abstract about the SIPPET study (Survey of Inhibitors in Plasma-Product Exposed Toddlers.)聽A plenary session with further information will be presented at the […]
HFA joins Plasma Protein Therapeutic Association (PPTA) and its other Member Companies sponsor the second International Plasma Awareness Week (IPAW) to be celebrated globally October 9-15, 2016.聽This event is held annually and is designed to: Raise global awareness about source plasma collection Recognize the contributions of plasma donors to saving and improving lives Increase understanding […]
Note: This article originally appeared on Medscape.聽To read the FDA release on聽Daklinza (genotype 3), click here. For the FDA release regarding聽Technivie (genotype 4), click here. The US Food and Drug Administration (FDA) approved two new drugs today for hepatitis C (HCV), one for genotype 3 and the other for genotype 4. The first medication is […]
Note: The following is taken from a press release from the Korean-based Institute for Basic Science. To read the original release, click here. Sufferers of hemophilia live in a perpetual state of stress and anxiety: their joints wear down prematurely and they have bleeding episodes that feel like they will never end. Their bodies lack […]
Last December,聽Food and Drug Administration (FDA)聽Commissioner Margaret A. Hamburg 聽set forth a recommendation to聽change the current blood donation policy for men who have sex with men (MSM). The old policy, set forth in the height of the AIDS crisis of the 1980s, barred men who have had sex with men since 1977 from donating blood. […]
Source: Children’s Hospital Los Angeles. 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 associated with infusions. For these reasons, under dosing is common, leaving children at increased risk for […]
Note: The below email was sent by the Centers Disease Control and Prevention (CDC) on April 3, 2015: People with聽hemophilia聽lack a protein (a clotting factor) necessary for blood to clot normally. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. The best way to treat hemophilia is to replace the […]
Research has suggested that women who are carriers for hemophilia (see definition in box聽below) might have an increased tendency to bleed. Repeat bleeding into the joint can lead to persistent joint swelling, ultimately leading to limited joint movement, and reduced joint range of motion.聽Given that there is an under-appreciation of the effects of being a […]
Research showed that bleeding events were drastically decreased in animals with Hemophilia B. Using a viral vector to swap out faulty genes proved safe and could be used for the more common Hemophilia A. _______________________________ A multi-year, ongoing study suggests that a new kind of gene therapy for Hemophilia B could be safe and effective […]
The following is an abstract from the March issue of the聽Mediterranean Journal of Hematology and Infectious Diseases. To read the full article, click here. _____________ Acquired hemophilia A (AHA) is a rare bleeding disorder due to the development of specific autoantibodies against factor VIII. The anti-CD20 monoclonal antibody Rituximab has been proven to be effective […]
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. […]
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