Barry Haarde has severe hemophilia A and HIV, yet that hasn’t slowed him down. Through his organization Wheels for the World, he has biked across the US to raise funds and awareness for Save One Life, which helps people with hemophilia in developing countries.
Tell us a little about yourself.
Both my brother and I were born with severe hemophilia A. Somewhat unusually, I had a brother-in-law who had hemophilia B—my sister married my brother’s best friend. I lost my brother-in-law in 1990 to AIDS, and my brother in 2007 to liver failure from hepatitis C. All three of us were infected with HIV in 1985.
What inspired you to start Wheels for the World?
It was hatched out of the ashes of four years of interferon treatment I began in 2007. I had about a 5% chance of clearing HIV, and after that it felt like getting a stay of execution from the governor. Before I started my treatment, I was a fairly decent amateur cyclist. So I decided I wanted to do a bike ride across the country. As far as I knew, nobody with hemophilia had ever done it before. Also, I really wanted to start devoting my full attention to doing what I could for the bleeding disorders community.
Why did you choose Save One Life as your charity?
It’s a unique organization and Laurie Kelly does really wonderful work. Also, she’s a bit of a fitness nut and I thought the ride would appeal to her. We started the first ride in 2012 and have done one every year since. The rides have raised about $220,000 for the organization.
Do you feel your rides across the country help raise awareness of what it is like to live with HIV?
I still meet people today who are recently diagnosed with HIV who believe that a diagnosis means you are facing a death sentence. It’s simply not the case. I am a 35-plus-year survivor and still going strong. I use the bike rides as a way to try to eliminate some of the stigma and misperceptions out there about the disease.
How do you manage hemophilia while training and during the rides?
I adhere to my standard three-times-a-week prophy schedule. A lot of people assume that I’m using crazy amounts of factor to do this, but I’m not. One of the things I want people to know is, you can go out and do things like this without using an inordinate amount of product, as long as you’re in good enough shape to do it.
Describe your 2017 ride.
We’ve done five coast-to-coast rides, which is pretty hard to top. This year’s ride is going to start in British Columbia. Then we’re going to ride the Alaska Highway and go around the state a little bit. It will start June 12. You can follow my progress on my Facebook page. I’m excited to get going!
To donate to Wheels for the World 2017: saveonelife.net