Bob Leahy: Hi Barry. We last spoke to you in August 2012 when you had just completed your first bike ride across the North American continent. Now you’ve just completed your second ride across the continent. Why did you do it again?
Barry Haarde: I guess long-distance endurance cycling is a little bit like hemophilia or HIV; it’s in your blood and you can’t get it out! Completing last year’s tour was such an emotional high, that upon its conclusion, I immediately began looking for another tour that would be more challenging athletically. We did well with the fundraising last year, so I wanted to repeat the effort to raise more funds for people with hemophilia in other countries who have little or no access to medications.
So how much did you raise this time?
I rode for Save One Life and we set a goal of $35,000 which we handily exceeded. The funds came from grass-roots donations, contributions from several specialty pharmacies, and from our title sponsor, Baxter Biosciences, a manufacturer of hemophilia medications.
Good job! Remind us how many miles that was – and how many days it took to accomplish it.
This year’s tour started in Costa Mesa, California and ended in Amesbury, Massachusetts, which was just under 3,500 miles. The tour took 33 days to complete, including a couple of rest days.
Was it hard on you? Harder than last time?
It was more challenging in that we were riding a daily average of about 112 miles. Last year’s tour averaged 85 miles per day, so I was on the bike more this time around. Having less time to recover between days made it harder and there were quite a few days where there was not much time for anything but eating, riding, and sleeping. There were five days where we rode over 130 miles, so, yes, it was a bit more work this time around.
That sounds tough. Looking back then, what were the ride highlights?
The big finish at Salisbury Beach was a memorable moment, but for some reason the question makes me think of the ride into Dalhart, Texas. The jet stream had taken a dive into the plains states for several days and brought with it freezing temperatures and strong headwinds. We had a 95 mile ride into Dalhart against 30-40 mph headwinds that never quit. We couldn’t ride close to one another as it was difficult to control the bikes in the violent and unpredictable gusts, nor could we communicate verbally because the wind was so loud. Every time an eighteen-wheeler would roar by, the wind would immediately cease and the sudden draft off the truck would nearly suck us under the trailer. I began noticing that more and more bikes were appearing on top of the support vans as riders began to call it a day and abandon the ride. About half the guys had quit by day’s end. I don’t know why, but I decided to remain on the road and I finally finished the day after over 10 hours of riding, having averaged only about 10mph. Another rider who had also stayed out and braved the conditions and I were at the back of those who finished, and we arrived at the hotel to the cheers and congratulations of the others.
It struck me at the time that we are never remembered or respected for doing the things in life that come easily, but rather for the challenges and adversity that we must face and overcome. HIV is like that- pure adversity; medically, socially, economically- you name it. It arrives unasked for, and leaves in its wake dispiritedness, loss of hope, stigmatization, and anxiety. If we are to defeat all of that, we must make a clear and intentional choice to “stay out on the road” and keep fighting, or it will beat us in the end.
Later in the tour, several of the others expressed regret at not having stayed out on the road to finish the ride that day and it made me think of those who, back in the 80s, gave up in the face of an AIDS diagnosis and took their own lives or just gave up hoping and fighting. It also made me think how fortunate I was to still be alive and even able to do this kind of thing at all in light of all the medical challenges I’ve had to confront. I was silent back in the dark days when everyone was saying we were all going to die of AIDS, and that the victims should be quarantined and all the other ridiculous things people were saying and doing. I survived all of that and proved a lot of people wrong and riding a bike all the way across America is, for me, a sort of final and ultimate vindication and a slap in the face to the purveyors of fear and hate who made our lives so miserable in those days.
What about disclosure issues now? How open are you about your HIV status while you are on the road?
The day before the tour began, we had an orientation meeting where all the tour participants stood up and introduced themselves and talked about why they were there. I told my entire story of having been born with hemophilia at a time when the average life span for a hemophiliac was still only about 25, then testing positive for HIV in ’85 at the age of nineteen and hearing that I probably had only a few years to live. I also talked about losing my brother and brother-in-law, both hemophiliacs, to hep C and AIDS, and finally how I’d been diagnosed with cirrhosis in ’08 and once again heard that without treatment or a liver transplant, I’d be dead in few years. I explained that after four years of grueling Interferon treatment, I’d cured the hep C, against considerable odds, and then got back into cycling and finally arrived at this crazy scheme of riding across the country, so yes, everyone on the tour was aware of my diagnosis.
Ever encounter any negative reaction, Barry?
None whatsoever, Bob. The tour company has a long-standing tradition of tracking our progress across the country in ink on a U.S. road map and then at the conclusion of the tour, they present the map to one rider who distinguished him or herself in some way while on the tour. Well, guess who was awarded the map? The staff and all the riders signed it and it is something I will always value and hold on to. Another of the riders asked me to autograph his jersey and several of the guys made generous donations to my fundraising effort which also meant a lot.
That's great! Tell me, how does your health status impact your ability to pull off an achievement like this?
Not much, actually. I have peripheral neuropathy in my feet, which makes all that pedaling pretty painful. I had to customize a pair of cycling shoes by cutting the top front of the shoe out, but it eases the pain to where I can function. My thirteen year old knee replacement gives me a little grief, but that too is manageable. Bleeding from hemophilia is easily controlled with medication, so, really, overall, I had no problems along the way.
So do you think you would ever have done this if it weren’t for your having to navigate Hep C and HIV?
I like using the bike as a means of illustrating to others that an HIV diagnosis as not a game-changer in terms of what you can do, both athletically and in life. When I was diagnosed with HIV back in the eighties, it was considered a death sentence, but now we have over thirty medications to treat the condition and there is just no reason at all to think that one’s life is over if diagnosed HIV positive. I originally got into cycling as a means of rehabbing my leg after a knee replacement due to the bleeding in the joint caused by hemophilia, so I suppose that initially had more to do with my interest in the sport than the HIV/hepC side of the equation.
OK, I want to ask you a few questions about your feelings about HIV generally. First off, is there a single day that you are able to forget about your status?
I suppose that I think about it at least twice a day on account of having to take meds for the condition twice a day, but I certainly don’t dwell on it the way we did in the eighties and nineties when there were fewer and less effective medications around and the stigmatization and discrimination against AIDS sufferers was at a fever pitch. I don’t think that friends and family members or coworkers think about it much at all either. The perception of a person’s health is most often based on superficial criteria – how someone appears and what are they capable of doing physically. I have many health issues, but they just aren’t particularly visible to others, especially since I’m doing things like working full-time and riding bikes a couple hundred miles per week.
Well, this may sound odd, but given an undetectable viral load and very limited ability to pass on the virus, how “normal” a person do you feel now. Just the same as anyone else or not?
I feel perfectly “normal” as any person with HIV should feel. I’m not sure if the perception has caught up to the reality in terms of how other people perceive the disease however. Often, just the mention of the letters “H-I-V” creates a certain perception and reaction, and people are often not aware that the virus can now, with medication, be suppressed to undetectable levels and they are often not aware that many HIV positive people are even fathering children safely. Certainly, one of the underlying motivations behind my riding a bike across the nation as an openly HIV positive person is to help change the perception that HIV is something to be deathly afraid of or that it should limit one in any way.
Good answer. Now, given so much attention to the topic of HIV and aging (you are how old by the way, Barry?), I’m wondering if you are starting to see or notice any effects of aging in your mind or in your body?
I’m now 47 and have lived with the virus for over 30 years. Hemophiliacs were among the first to contract HIV when it first entered the blood supply in the late 70s/early 80s, which makes me one of the oldest living survivors. I developed peripheral neuropathy a few years ago after having to be off all my meds a couple times, but outside of that, I can’t perceive anything physically. We’ve all been hearing a lot about “brain fog” and concentration problems; there may be a little of that, but there’s no way to determine how much of it may be meds or the underlying condition, or how much is just me being forgetful or simply getting older, so who knows?
Why do you think we are not making a lot of headway in reducing new infections in many countries, including the United States and Canada?
I think that the pendulum has swung the other way in terms of the fear and paranoia that initially defined HIV/AIDS and society’s reaction to it. That’s both good and bad. In the 80s and 90s, you had all this irrational hysteria, so people began to be very careful about what they were doing in their private sexual lives. Now, you have young people saying “well, if I get it I’ll just take a pill and everything will be OK”, which of course is untrue. People still need to think about the financial burdens of the meds, the side effects, and the long-term effects of the disease, which are only now being analysed. There’s still some social stigma around too, so this is still a disease you do not want to get. HIV is 100 percent preventable, so we need to be smarter about how we are thinking about HIV in the modern era. We should not have relaxed the efforts at AIDS education that were mounted in the late eighties and nineties, and I’m afraid we’re just not talking about it enough anymore. That’s yet another good reason behind what I and other HIV positive athletes are doing.
I think so too. So what’s next for Barry?
Bob, I’ve been asked that a lot since finishing the tour, and at this point, I’m not quite sure! More and more opportunities are coming my way; more fundraising rides and more speaking opportunities, which I love, but my challenge now is to balance it all out with my job and everything else. My managers here at Hewlett Packard have been very supportive and have allowed a great deal of extra time off for me to do the volunteer work and the bike tours, but at the end of the day, you can only ask for so much. For now, I want to follow up the big tour with a couple of smaller goals. While I’ve still got the conditioning I developed over the cross-country tour, I want to complete my first 200 mile ride in a day, referred to in the cycling universe as a “double century”, and I want to attempt a 24 hour endurance ride and see how many miles I can squeeze into it. Pushing the limits and continually striving towards a new threshold is a great motivator and it got me this far, so as far as “what’s next”, I’ll just leave you with a “stay tuned” and we’ll see you down the road!
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