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FDA approves Viekira Pak to treat Hepatitis C

January 5, 2015

The U.S. Food and Drug Administration today approved Viekira Pak (ombitasvir, paritaprevir and ritonavir tablets co-packaged with dasabuvir tablets) to treat patients with chronic hepatitis C virus (HCV) genotype 1 infection, including those with a type of advanced liver disease called cirrhosis. Hepatitis C is a viral disease that causes inflammation of the liver that […]

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 […]

Update #3: NHF’s MASAC Assessment on Inhibitor Studies

December 3, 2014

On September 24, 2014, the medical journal,聽Blood, came out with a study called,聽Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using聽Kogenate/Helixate.聽 The聽World Hemophilia Federation聽(WHF) issued a聽statement on October 6,聽and another […]

Promising Gene Therapy Results in Treating Hemophilia B

November 20, 2014

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 this study, 10 […]

FDA Approves New Treatment for Rare Form of Hemophilia

October 25, 2014

On Friday, October 24, 2014, the U.S. Food and Drug Administration approved Obizur [Antihemophilic Factor (Recombinant), Porcine Sequence] for the treatment of bleeding episodes in adults with acquired hemophilia A (acquired Factor VIII [FVIII] deficiency). Acquired hemophilia A is a rare, but potentially life threatening, bleeding disorder caused by the development of antibodies (immune system […]

FDA Approves First Combination Pill to Treat Hepatitis C

October 10, 2014

The U.S. Food and Drug Administration today approved Harvoni (ledipasvir and sofosbuvir) to treat chronic hepatitis C virus (HCV) genotype 1 infection. Harvoni is the first combination pill approved to treat chronic HCV genotype 1 infection. It is also the first approved regimen that does not require administration with interferon or ribavirin, two FDA-approved drugs […]

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 to […]

Journal of Blood Medicine: Inhibitor Challenges

August 26, 2014

Inhibitors are antibodies that the immune system develops because it sees the infused clotting factor as a foreign substance that needs to be destroyed. Antibodies are proteins that eat up the activated factor before it has time to stop the bleeding. Approximately 30% of people with severe Hemophilia A are affected by inhibitors at some […]

Penn Research Could Improve Hemophilia Treatment

July 17, 2014

*This article was originally posted on July 17, 2014 in聽Penn Current聽and was written by聽Katherine Unger Baillie.聽Click here to read this article in its entirety. ____________________________________ Hemophilia is a rare but potentially dangerous disease. People with the condition produce very low levels of clotting factor, the proteins in blood that stop bleeding and help begin the […]

CMS: Medicare Will Cover HCV Screening

June 5, 2014

The Centers for Medicare & Medicaid Services (CMS) has determined the following: The evidence is adequate to conclude that screening for Hepatitis C Virus (HCV), consistent with the grade B recommendations by the U.S. Preventive Services Task Force (USPSTF), is reasonable and necessary for the prevention or early detection of an illness or disability and […]

CDC Six-Year Inhibitor Study Released

May 16, 2014

The journal Haemophilia has published the results of a six-year study called the Hemophilia Inhibitor Research Study (HIRS) that was designed to test the feasibility of conducting national monitoring for inhibitors among people with hemophilia in the United States. The study collected blood specimens on a regular basis from study participants, which were tested at […]

CDC: Report on the Universal Data Collection (UDC) Project

April 29, 2014

From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s聽Universal Data Collection (UDC)聽to help collect vital health information from about 27,000 patients in the bleeding disorders community. Report Highlights from the UDC Report This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made […]

Hemophilia Patients Urge NIH & IRB To Stop Ineffective Hepatitis C Trial

April 22, 2014

Below is a letter from People with Bleeding Disorders and HCV, to the Institutional Review Board (IRB)聽and National Heart, Lung, and Blood Institute (NIH) office recommending to end recruitment of a clinical study (pINF+RIBA+Telaprevir). 聽People with Bleeding Disorders feel聽that this study is out-dated and mediocre therapy for Hepatitis C (HCV). ——————————————————— TO: Institutional Review Board, […]

PSI Letter to Secretary Sebelius About Patient Assistance Programs

February 1, 2014

On January 31, 2014 Patient Services Incorporated, (PSI) sent the below letter to聽Secretary Sebelius to highlight the importance of patient assistance programs for families and to urge the department to refine its message about premium assistance taking into account the numerous assistance models. ____________________________________________ Dear Secretary Sebelius: I would like to first take this opportunity […]

FDA Issues Positive Review for Gilead’s Hep C Drug

October 23, 2013

By Matthew Perrone,聽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 […]

Gene Therapy Study Produces Promising Results for Patients with Hemophilia B

September 19, 2013

A fraction of patients with a common form of the bleeding disorder hemophilia develop an allergic reaction to the blood-clotting treatment they need to keep them alive. But using gene therapy, University of Florida researchers were able to reverse this reaction and provide long-lasting treatment for the disease in an animal model, according to findings […]

FDA Rejects Two Gilead HIV Drugs as Standalone Products

April 29, 2013

Washington (Reuters) – Gilead Sciences Inc said on Monday that U.S. health rejected two of its HIV drugs as standalone therapies, citing deficiencies in documentation and validation of certain quality testing procedures. Gilead said it is working with U.S. Food and Drug Administration to address the questions raised in the rejection letter in order to […]

New CDC Division of Blood Disorders Director

April 1, 2013

Dr. Lisa Richardson will be joining the Division of Blood Disorders as the Division Director on April 8, 2013. Dr. Lisa C. Richardson is a medical officer at the Centers for Disease Control and Prevention in Atlanta, Georgia. Dr. Richardson most recently served as the Associate Director of Science in the Division of Cancer Prevention […]

CNN: Researchers Say Toddler Cured of HIV

March 4, 2013

(CNN) — It’s a potential game changer in the fight against HIV, and doctors say it happened almost by accident. A baby with the virus that causes AIDS was given high doses of three antiretroviral drugs within 30 hours of her birth. Doctors knew the mother was HIV positive and administered the drugs in hopes […]

Hemophilia Association of NY Request Proposals for Research Grants

February 7, 2013

Bleeding Disorders FVIII Research, excluding inhibitors research Proposals should involve laboratory scientist/clinician collaboration and may be multi-institutional. Designed to facilitate an eventual clinical trial. If at that time the project is ready for clinical trial, further funding may be available to support that trial. ELIGIBILITY: Applicants must hold an M.D., Ph.D. or equivalent degree and […]

New England Journal of Medicine:Inhibitor Development in Severe Hemophilia A Patients

January 18, 2013

NEJM Article,聽Factor VIII Products and Inhibitor Development in Severe Hemophilia A BACKGROUND For previously untreated children with severe hemophilia A, it is unclear whether the type of factor VIII product administered and switching among products are associated with the development of clinically relevant inhibitory antibodies (inhibitor development). METHODS We evaluated 574 consecutive patients with severe […]

FDA: Metal-on-Metal Hip Implants: Safety Communication – Updated Safety Recommendations

January 17, 2013

AUDIENCE: Orthopaedic surgery, Radiology, Risk Manager ISSUE: FDA notified healthcare professionals that it is providing updated safety information and recommendations to patients and health care providers, based on the FDA’s current assessment of metal-on-metal hip implants, including the benefits and risks, the evaluation of the published literature, and the results of the June 2012 Orthopaedic […]

Novo Nordisk announces U.S. results of largest multinational psychosocial study of living with hemophilia

November 7, 2012

Orlando, Fla. – U.S. patient and caregiver results derived from the largest multinational psychosocial study of the hemophilia community are being presented at the National Hemophilia Foundation (NHF) 64th Annual Meeting. In total, four posters were accepted from the Hemophilia Experiences, Results and Opportunities (HERO) study, a comprehensive analysis of the experience of living with […]

U-M Registers Six New Embryonic Stem Cell Lines

June 14, 2012

Source:聽Detroit News聽聽By: Kim Kozlowski The genetic mutation responsible for a blood clotting disorder known as hemophilia B is among two embryonic stem cell lines created by the University of Michigan and believed to be the first in the world to carry the disease, officials announced Thursday. The two stem cell lines are among six new […]

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

Prolor Reports Positive Results in Hemophilia Study

February 14, 2012

Link to Article The study found that the mice which received Factor VIIa-CTP showed a superior survival rate. Prolor Biotech Inc. (AMEX: PBTH; TASE: PBTH) today reported positive results in a comparative study of its longer-acting version of the hemophilia drug Factor VIIa, Factor VIIa-CTP drug, in a preclinical trial in mice. The study is […]

Developments in Clinical Use of Plasma Therapies

February 14, 2012

Link to Website IPPC 2012 SPEAKERS TO ADDRESS DEVELOPMENTS IN CLINICAL USE OF PLASMA PROTEIN THERAPIES BRUSSELS, BELGIUM (February 14th, 2012) The International Plasma Protein Congress (IPPC) 2012 will take place on March 13-14 in Madrid, Spain at the Hotel Melia Princesa and will feature a panel of experts discussing their findings on the development […]

HCV/HIV Drug Safety Communication – Drug Interactions

February 9, 2012

Link to Official FDA Alert 聽聽聽聽聽聽聽 [Posted 02/09/2012] Victrelis (boceprevir) and Ritonavir-Boosted Human Immunodeficiency Virus (HIV) Protease Inhibitor Drugs: Drug Safety Communication – Drug Interactions AUDIENCE: Infectious Disease, Pharmacy ISSUE: FDA notified healthcare professionals and patients that drug interactions between the hepatitis C virus (HCV) protease inhibitor Victrelis (boceprevir) and certain ritonavir-boosted human immunodeficiency virus […]

WFH appoints John Bournas as new CEO/ ED

January 11, 2012

Click for link to WFH Montreal, Canada, January 10, 2012 鈥 The World Federation of Hemophilia is pleased to announce the appointment of John Bournas as CEO/Executive Director. Mr Bournas brings over fifteen years of senior managerial experience in the healthcare and not-for-profit sectors and international experience as a diplomat. His areas of expertise include […]

Treatment for Blood Disease Is Gene Therapy Landmark

December 12, 2011

By NICHOLAS WADE Published: December 10, 2011 Medical researchers in Britain have successfully treated six patients suffering from the blood-clotting disease known as hemophilia B by injecting them with the correct form of a defective gene, a landmark achievement in the troubled field of gene therapy. Hemophilia B, which was carried by Queen Victoria and […]


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