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Recognizing National Hepatitis Awareness Month

May 1, 2014

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 factor […]

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

FDA: Hemophilia Treatments Have Come a Long Way

April 18, 2014

Gone are the days when a hemophilia diagnosis meant you could not live a normal life. Now more hemophilia treatments are approved by the Food and Drug Administration (FDA), and people with the condition can better manage bleeding. That’s good news as thousands observe World Hemophilia Day on April 17, 2014. Hemophilia is a rare bleeding […]

Bloomberg News: Merck Data a Potent Rival to Gilead’s Hepatitis C Pill

April 15, 2014

By: Drew Armstrong Merck & Co. (MRK)’s experimental hepatitis C pill produced clinical trial results positioning the drug as a strong competitor to a potential blockbuster therapy from Gilead Sciences Inc. (GILD) Merck’s two-drug combination once-a-day pill stopped the virus in 98 percent of newly treated patients with few major side effects, according to a […]

CDC Webinar: New Challenges in Hemophilia

April 8, 2014

On Thursday, April 3, 2014 the Centers for Disease (CDC) control hosted an informative and important webinar about new challenges facing the hemophilia community. If you missed it, take a look at Dr. Guy Young, Director of the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles, presentation slides about about the impact of: overweight and […]

HIV-Infected Men and Heart Disease

April 4, 2014

Many individuals with hemophilia are living longer, healthier lives due in large part to advances in treatment, access to treatment and knowledge of self care strategies.  Because they are living longer, it is so important for people with hemophilia and other bleeding disorders to make healthy lifestyle choices especially related to diet and exercise.  A nutritious diet and some form of  […]

2000s: Living with a Bleeding Disorder

March 24, 2014

  In the early 2000’s, the divide in the hemophilia community between the HIV/AIDS-era families, post-heat treated, and recombinant factor using families slowly begins to heal. The community sees a resurgence in families coming together through camps, local, and national meetings. The term “hemophilia” begins to be replaced by the term “bleeding disorders” to acknowledge all […]

1998: Ricky Ray Relief Fund Act Passed

March 23, 2014

 *Photos courtesy of Corey Dubin Ricky Ray Hemophilia Relief Fund Act of 1998 PUBLIC LAW 105–369—NOV. 12, 1998 [H.R. 1023] To provide for compassionate payments with regard to individuals with blood- clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated antihemophilic factor, and for other purposes. Be it enacted by the […]

1995: A Turning Point for Hemophilia

March 21, 2014

*Articles courtesy of Barry Haarde  In 1995, a Committee of the Institute of Medicine (IOM), releases a report called, HIV and the Blood Supply: An Analysis of Crisis Decision Making, this report is a turning point for the hemophilia community. Click HERE to read the IOM report ________________________________________ Title: Blood Safety Changes Ordered Subtitle: They Include A […]

1980’s: Hemophilia, HIV/AIDS, and Hepatitis C

March 17, 2014

In 1982, the Centers for Disease Control (CDC) reported the first case of HIV/AIDS among people with #hemophilia, and concerns began to grow that the blood supply was tainted. Despite warnings from the CDC, leaders in the hemophilia community encouraged patients to continue using clotting factor (more information below). In 1983, several manufacturers began the […]

1970s: Living with Hemophilia

March 16, 2014

Title: Doctor Claims 95% Accuracy in New Test for Hemophilia By: Unknown  Date: 1973 Source: Associate Press  A researcher says a new method has been developed that offers a 95% chance of spotting female carriers of hemophilia (bleeding disorders) as compared with only 25% accuracy with present ways. Hemophilia is a hereditary blood malady that strikes only men but […]

Mid-Late 1960’s: Hemophilia Treatment

March 14, 2014

Title: Hemophiliac Lifespans Grow By: Ellen Hale Date: Unknown Source: Gannett News Service New medical advances are letting people with hemophilia live longer and better than ever before, researchers say. But the success with the “bleeder’s disease” has brought on new problems few of them foresaw. Suddenly, they are finding they must treat not only the disease, but […]

1950’s-1960’s: Early Hemophilia Treatment Articles

March 13, 2014

Title: Bee Stings May Save Boy’s Life* By: Unknown  Source: St. Petersburg Times Date: May 19, 1957 A 16 year-old Clearwater boy is taking a deep interest in bees these days. They may be saving his life. It worries him that the ones who come to his aid must die in return. The youth is Jackie McAllister, […]

NY Times: Progress Against Hepatitis C, a Sneaky Virus

February 26, 2014

Forty years ago, a beloved neighbor was bedridden for weeks at a time with a mysterious ailment. She knew only that it involved her liver and that she must never drink alcohol, which would make things worse. It was decades before the cause of these debilitating flare-ups was discovered: a viral infection at first called […]

NY Times: Peanut Called a Hemophilia Aid (Circa 1960)

January 23, 2014

© New York Times, 1960, By: John A. Osmundsen The lowly peanut may become the conqueror of the disease of kings. Something in the meat of that seed, an American scientist has found, appears to be capable of stemming the flow of blood in hemophilia. This is the so-called “bleeders’ disease,” notably associated with royal families. The […]

NBC News: Flu Worsens, Hitting Younger Adults Hard

January 3, 2014

Source: NBC News By: Cydney Weiner and Maggie FoxNBC News It’s flu season, all right. Federal officials reported on Friday that influenza activity is widespread in 25 states and regional in 20 more, although it’s not at epidemic levels yet. “We’re seeing pretty substantial increases in activity, but they’re not unexpected,” says Dr. Michael Jhung, […]

HIV Patients’ Organs May No Longer Be Turned Away

November 15, 2013

MedCity News — The House of Representatives passed the HIV Organ Policy Equity (HOPE) Act Nov. 12. Once signed into law, this would allow ‘positive to positive’ organ donations. According to the Human Rights Campaign: “Permitting organs from deceased, HIV-positive donors to be used for transplant to HIV-positive recipients has the potential to save 1,000 […]

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 […]

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 […]

Federal Data System for Obamacare Exchanges Gets Security OK

September 13, 2013

(Reuters) – The data system supporting President Barack Obama’s healthcare reform has been tested and certified as secure for millions of Americans who will seek health coverage beginning on October 1, meeting a critical deadline for launching the program, the administration said on Wednesday. Concerns over whether consumer information would be secure in time were […]

Hepatitis C: Our History and Advances on the Horizon

August 8, 2013

Recognizing National Hepatitis Awareness Month The month of May is recognized to bring awareness around those living with viral hepatitis. The awareness effort encourages people to get tested for hepatitis and to evaluate treatment options. According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million people in the U.S. with chronic […]

NY Times: After Marrow Transplants, 2 More Patients Appear HIV-Free Without Drugs

July 3, 2013

By DONALD G. McNEIL Jr. Two H.I.V.-infected patients in Boston who had bone-marrow transplants for blood cancers have apparently been virus-free for weeks since their antiretroviral drugs were stopped, researchers at an international AIDS conference announced Wednesday. The patients’ success echoes that of Timothy Ray Brown, the famous “Berlin patient,” who has shown no signs […]

Supreme Court Says Isolated Human Genes Cannot Be Patented

June 13, 2013

WASHINGTON (AP) — The Supreme Court ruled Thursday that companies cannot patent parts of naturally-occurring human genes, a decision with the potential to profoundly affect the emerging and lucrative medical and biotechnology industries. The high court’s unanimous judgment reverses three decades of patent awards by government officials. It throws out patents held by Salt Lake […]

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 […]

Life Sciences Firm Entegrion Lands Global Partner

April 1, 2013

Research Triangle Park, N.C. — Blood technologies company Entegrion is partnering with an Italian company to develop and commercialize Resusix, Entegrion’s freeze-dried human plasma. Under the deal, Kedrion Melville gains exclusive worldwide rights to commercialize Resusix. Entegrion, based in Research Triangle Park, will collaborate with Kedrion on clinical development of the product. Clinical trials are […]

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 […]

FDA Accepts Biogen Idec’s License Application for First Long-Lasting Factor Therapy for Hemophilia B

March 4, 2013

WESTON, Mass.-Biogen Idec announced today that the U.S. Food and Drug Administration (FDA) has accepted the company`s Biologics License Application (BLA) for the marketing approval of recombinant factor IX Fc fusion protein (rFIXFc) for the treatment of hemophilia B and granted the company a standard review timeline. Recombinant FIXFc is the first product candidate in […]

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 […]

White House Petition: Help Save Lives of Millions With Hepatitis C

February 18, 2013

Dear Friends, We need your help in order to get this cure for Hepatitis C. · Over 170 million people worldwide have Hepatitis C (HCV) · Hepatitis C now kills more people than AIDS · Hepatitis C is now the leading reason for liver transplants The cure was developed by two drug companies together, but […]


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