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FAQ: Hemophilia Memorial at the National Memorial AIDS Grove

July 12, 2017

  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 “Surviving Voices” 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 […]

Fatherhood & Hemophilia

June 18, 2017

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’re both adults, I can’t express how […]

FDA Issues Warning New Hepatitis C Drugs Could Reactivate Hepatitis B Virus

October 9, 2016

The following is excerpted from an FDA news release. To read the release in its entirety, click 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. “In a […]

Hepatitis: Not Just For Men

July 28, 2016

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 […]

Remembering Ryan White 26 Years Later

April 7, 2016

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. Learn more about Ryan’s legacy by clicking […]

FDA Clears Two New Oral Drugs for Hepatitis C

July 27, 2015

Note: This article originally appeared on Medscape. To read the FDA release on Daklinza (genotype 3), click here. For the FDA release regarding 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 […]

FDA Making Progress With Blood Safety Monitoring System

May 15, 2015

Last December, Food and Drug Administration (FDA) Commissioner Margaret A. Hamburg  set forth a recommendation to 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. […]

Gilead’s $1,000 HCV Pill Is Hard for States to Swallow

April 8, 2015

Note: This story was originally published by Joseph Walker, Wall Street Journal reporter, on April 8, 2015. To see the original post, click here. ____________________ A pricey pill made by Gilead Sciences Inc. 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 […]

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 […]

Mens Health Magazine: Vaughn Ripley

October 28, 2014

Earlier this year we encouraged the bleeding disorders community to vote for Vaughn Ripley, fitness guru living with hemophilia and HIV, during a Men’s Health 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 […]

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 […]

Brighter Outlook for Community Members Affected by HCV

October 8, 2014

Hepatitis C (HCV), often referred to as the “silent killer”, 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 […]

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 […]

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 […]

Dear Addy: Veteran’s Health Care

July 7, 2014

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’s health care program. If you are not enrolled in TRICARE or the Veteran’s […]

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 […]

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 […]

How a Liver Transplant Changed My Life

April 25, 2014

One of the most important things you can do for your health is to have a proper diet. What you put into your body affects how you look and feel. Maintaining a healthy weight is especially important for individuals with a bleeding disorder. Being at a healthy weight can reduce the number of bleeding episodes you experience, […]

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, […]

Positive Life: Barry Haarde Road Tripping Again

April 20, 2014

(Positive Life): Bob Leahy: Barry. You’re off on another trip. Tell us about this one. Barry Haarde: This year’s 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 Hemophilia Drug Prices On Par With Older Therapies

April 18, 2014

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 […]

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 […]

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  […]

Early 1990’s: Living with Hemophilia

March 19, 2014

The early 1990’s 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 […]

Honoring All Moms, Past & Present

May 8, 2013

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 Lamb

July 2, 2011

Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!


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