Barry Haarde is a remarkable 50 year old long term survivor of both HIV and HepC who is about to embark on his fifth transcontinental bike ride for Wheels for the World 2016: Saving Lives by the Mile. Since 2012, Barry has ridden over 10,000 miles to help raise $150,000 for Save One Life. Barry's goal this year? 5,000 miles--from Everett, Washington through 22 states to Key Largo, Florida! He will ride from July 17 - September 11.
Bob Leahy: Hi Barry. This is your fifth transcontinental bike ride. Tell me about this particular one – the route and why it’s different.
Barry Haarde: This year is the longest tour yet at 5,000 miles. The ride rolls west-to-east from just north of Seattle to St. Thomas, Ontario and then I’ll be jumping over to Portsmouth, New Hampshire by car and then heading south by bike to Key West, FL. Altogether, we’ll be traversing 22 states and Canada over roughly nine weeks.
Key West is a nice place to end the ride, as well as bit of a gay mecca by the way. What do you intend doing once you get there?
I’ll be spending several days riding between the Keys and will finish at the southern-most point in the U.S. I’ve always wanted to visit the Hemingway home, the lighthouse, and maybe I’ll even jump over to the Dry Tortugas (by seaplane, not bicycle!) and do a little sightseeing there. I’ve only been to the Keys once as a child, and am looking forward to ending the tour there. Lord willing, we won’t get any hurricanes, which could happen given that I’ll be riding down the Florida coast in September, which is the peak season for hurricanes.
We hear a lot about HIV and aging but you are still going strong. Is it getting harder on your body to complete these events?
I’m feeling my age (I’m now 50) a little more as time goes by. I have peripheral neuropathy in my feet, a common side effect of HIV treatment, which causes a great deal of pain on long ride days. I’m also cruising on a 16-year old knee replacement on which I’ve already ridden around 90,000 miles, so I sometimes have some pain issues there as well. Given that doctors predicted I’d only live a few years after my HIV diagnosis in 1985 at age 19, however, I have to think that all things considered, I’m still really quite ahead of the game in terms of the way I’ve been able to survive and thrive all these years.
You have a remarkable record of fundraising. How much are you aiming to raise this time around and what are your secrets to successful fundraising?
The first four trans-con rides combined with what we’ve already raised for this year’s ride have generated over $200,000 for Save One Life, an organization dedicated to providing financial assistance to people with hemophilia in developing nations which lack access to medications to treat hemophilia. We’ve been fortunate to have some corporate partners, including Baxalta, Biogen-Idec, Bayer Healthcare, Alliance Pharmacy and others, as well as many grass-roots sponsors. Together, they’ve helped make these rides happen every year since 2012. I must also acknowledge my managers at Hewlett-Packard Enterprise who have supported my efforts in terms of facilitating the considerable amounts of extra time off required to complete these rides each year. We’ve set a goal of $50,000 for this year’s event and we’re already well on our way.
Are you able to also raise awareness of HIV and HIV during the ride as well as money – and if so, how do you do that?
I have been very public about my HIV status for nearly ten years now and I hope that my efforts have had some impact in terms of eliminating the stigma and misconceptions surrounding HIV infection. I often speak at hemophilia conferences and events around the country, but I would like to do more education and outreach in the HIV/AIDS community. I’ve had less success in getting my story out there in the AIDS community, however. Hopefully, some of the HIV/AIDS publications will be willing at some point to share my history with their readers- at any rate, I’ll keep trying. In many respects, the hemophilia/blood transfusion aspect of the AIDS pandemic has been largely forgotten over the years as so many of us have died. Thankfully, the world’s blood supplies have become vastly safer and nearly free of HIV and hepatitis since the early 90s, though I would not characterize the risk of transmission through blood and blood products as being completely, 100% safe as of yet.
Since you started doing these rides, our collective ability to make inroads against both HIV and Hep C has undergone remarkable improvements. The end of the HIV epidemic may be in sight in fact, but what do you see as the main barriers to getting the job done?
It looks as if gene therapy and gene editing technologies will bring us the next generation of medications and ultimately a cure. For many years, the greatest obstacle in this area was simply the lack of funding and investment capital required to bring gene therapy to fruition. Finally, though, it appears that real progress in this area is imminent. Interestingly, the same research is being applied to hemophilia and some very real and discernible improvements in treatment are already in human clinical trials and should only be a few years away from reaching the marketplace. Hepatitis C treatment is vastly superior to what was available only a few years ago as well. I had to cure the disease the “old fashioned” way, with nearly four years of grueling daily shots of Interferon and Ribavirin, but as I’d been diagnosed with cirrhosis back in ’07, I did not have the option of waiting for the newer direct-acting anti-virals to arrive on the market.
Do you ever forget to take your meds while on the road?
Very, very, rarely. As we’ve learned over the years, compliance is critical when treating both HIV and Hep C, and I’m sure that remaining diligent about taking my meds has been of the contributing factors of my survival. I began treatment for HIV in the early 90s at a time when AZT was the one and only medication we had. Now there are over 35 different therapies for HIV, so clearly our options have improved exponentially as the years and decades have passed.
What do you like doing when you are not riding a bike?
I devote a lot of time to hemophilia advocacy and have served on the boards of a couple of our advocacy organizations. I still work full time as well, which when coupled with riding a bike 10,000 miles per year makes for a pretty busy schedule and doesn’t leave a great deal of free time.
And your guilty pleasures are what?
Not much time for those with my schedule! Spending thousands of dollars at my bike shop in order to keep rolling out these ridiculous mileages might qualify as a guilty pleasure, I suppose, but there’s no avoiding that! I used to be an avid wine aficionado, but of course that came to an abrupt conclusion at the time of my cirrhosis diagnosis. My greatest joy remains all of the travelling that accompanies the bike tours and speaking events and so forth, so I hope to continue doing that as long as I have the legs and the breath in my body to do it. Or as we say in the velo world- “ride it ‘til the wheels fall off.”
For more information, go to www.saveonelife.net.