Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
How did the Hemophilia Memorial at the National AIDS Memorial Grove come to be? In 2016, National AIDS Memorial Grove reached out asking for support for their 鈥淪urviving Voices鈥 project. This is a multi-year oral history project meant to ensure that stories and lessons of the AIDS epidemic are captured, curated, and retained for […]
Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we鈥檙e both adults, I can鈥檛 express how […]
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 […]
I have severe factor 1 deficiency (afibrinogenemia) and have been Hepatitis C (HCV) positive since 1998. My source of infection was one of my many cryoprecipitate infusions (cryo being the only available treatment for anyone with factor 1 deficiency until 2009, and for me until November 2014). What makes me different than most people with […]
Ryan White died at the age of 18 on April 8, 1990. During the 1980s, Ryan bravely became a national spokesperson and symbol of hope for the hemophilia and HIV/AIDS community after being expelled from middle school due to community fears that the virus would spread to other children.聽Learn more about Ryan’s legacy by clicking […]
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 […]
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. […]
Note: This story was originally published by Joseph Walker,聽Wall Street Journal reporter, on April 8, 2015. To see the original post, click here. ____________________ A pricey pill made by聽Gilead Sciences聽Inc.聽caused Medicaid spending on hepatitis C treatments to soar last year, even as most states restricted access to the drug, leaving many low-income patients untreated. State […]
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 […]
Earlier this year we encouraged the bleeding disorders community to vote for Vaughn Ripley, fitness guru living with hemophilia and HIV, during a聽Men’s Health聽cover contest. Due to your support, Vaughn received nearly 30,000 votes, earning him the below article in the November edition of the magazine! This article helps to bring awareness and education about […]
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 […]
Hepatitis C (HCV), often referred to as the 鈥渟ilent killer鈥, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]
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 […]
On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 share […]
On Monday, September 22,聽several members of the bleeding disorders community came out to聽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 share […]
On Monday, September 22, members of the bleeding disorders community came out to聽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 share […]
On Monday, September 22, 聽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 […]
Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the聽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 […]
Dear Addy, Will the ACA [Affordable Care Act] affect military insurance for active duty and retirees? Signed, A Curious Veteran ___________________________ Dear Veteran, The ACA will not affect active duty military or veterans who are enrolled in either TRICARE or the Veteran鈥檚 health care program. If you are not enrolled in TRICARE or the Veteran鈥檚 […]
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 […]
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 […]
One of the most important things you can do for your health is to have a proper diet. What you put into your body聽affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding聽disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]
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, […]
(Positive Life): Bob Leahy:聽Barry. You鈥檙e off on another trip. Tell us about this one. Barry Haarde: This year鈥檚 ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, […]
Reuters – Biogen Idec Inc is pricing its newly approved long-acting hemophilia drug, Alprolix, to cost U.S. patients, and insurers, about the same per year as older, less convenient therapies whose price can reach about $300,000 annually. The move could pressure rivals such as Pfizer Inc to lower prices for existing hemophilia treatments, which provide […]
By: Drew Armstrong Merck & Co. (MRK)鈥檚 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鈥檚 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 […]
Many individuals with hemophilia are living longer, healthier lives due in large part to advances in treatment, access to treatment聽and knowledge of self care strategies.聽 Because they are living longer, it is so important for people with hemophilia and other bleeding disorders to聽make聽healthy lifestyle choices聽especially聽related to diet and exercise.聽聽A nutritious diet and some form of聽 […]
The early 1990鈥檚 marked a period of action in the hemophilia community. In 1990, Ryan White died at the age of 18 and in 1992, Ricky Ray, one of three brothers infected with HIV/AIDS died at the age of 15. During this time, the hemophilia patient community began to independently ask their own questions and […]
Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]
Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!
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