Barry Haarde Bikes Across U.S. -- All While Living With HIV and Hemophilia
May 29, 2014
Born with hemophilia in 1965, Barry Haarde is part of a generation of hemophiliacs who contracted HIV and hepatitis C from blood supplies in the 1980s. For the past few years, in order to fight HIV stigma and show the capabilities of people living with HIV and hemophilia (Haarde cured his hepatitis C in 2010), he has orchestrated a cross-country bike ride. He rides 2900 miles across the United States from sea to shining to show people that there are no limits when living with HIV. He also raises money for "Save One Life," which helps get drugs to people living with hemophilia in developing countries.
Can you tell us about your HIV diagnosis? How did you feel? Who were the first people you told?
I was diagnosed in '85 when the fear, stigma, and uncertainty were running rampant. I recall that it was months before we even told members of our own family about our diagnosis. It was a triple whammy in that I also had a brother and brother-in-law, both hemophiliacs like me, who also tested positive. We all went deeply into the closet at the time. The (Ryan) White family took a bullet through their family's home and the Ray family in Florida, who had three boys with hemophilia, had their home burned to the ground by paranoid neighbors. A lot of people diagnosed with HIV/AIDS were fired from their jobs, tossed out of school, and even asked to leave their churches. It was a horrible period back in the 80s and 90s.
How many years have you been cycling?
I got into cycling as a result of a total knee replacement back in '99. I got a lot more serious about it as the years went by. In 2012, after curing hepatitis C, I completed my first 10,000+ mile year.
When did you start the event of biking across America? Does it have an official name? Who does this year's bike across America benefit in terms of fundraising?
My first cross-country tour was also in 2012 and started in Astoria, OR and finished in Portsmouth, NH for a total of 3,700 miles in 49 days. Tour number two was much faster and began in L.A. and once again finished in Portsmouth. It took 33 days to complete for an average of about 110 miles per day. Our third tour, just completed, started in L.A. again and finished in Savannah, GA in 27 days. All three tours were called "Wheels for the World" and were a fundraiser for Save One Life, an organization which provides assistance to people with hemophilia in developing nations who have little or no access to medications to treat the disorder because of their high cost.
Does living with HIV, hepatitis C or hemophilia make it difficult to train for this cross-country bike? Do any aspect of living with these three coinfections hinder you at all?
Both HIV and hemophilia are pretty easily controlled with medications, but a few years ago I developed peripheral neuropathy which is by far the biggest and most painful hindrance. I had to have the toes cut out of my cycling shoes in order to tolerate the high pain level, but it only helps so much. None of the therapies I've tried to treat the neuropathy have been even remotely effective, so I just have to grin and bear it.
What do you hope to show people living with HIV, hepatitis C or hemophilia?
I hope to show with the cross-country bike tours, that a lot of the misconceptions about HIV and perhaps to a lesser extent, hemophilia, are exactly that; misconceptions. A lot of people still think that an HIV diagnosis is a "death sentence" or that it means you can't do a lot of things anymore, which is simply not true. All too often, when people are confronted with a medical diagnosis of just about any kind, they simply give up thinking that they can achieve certain things and the rides across America are aimed squarely at dispelling that kind of reaction.
Have you begun to speak to your doctor about the hepatitis C cure pill?
I was lucky enough to cure hepatitis C back in 2010, but I had to use the "old school" daily Interferon with Ribavirin to do it because that was all that was available at the time and I was diagnosed with cirrhosis, so I couldn't wait for the newer meds that I knew were in the pipeline and that are now available. The clinical outcomes are much better now and the side effect profiles of the new therapies are much better, so anyone delaying treatment should take a serious look at doing it now.
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