Bob Leahy: Good to speak to you again. Barry, you are about to embark on your fourth bike ride across North America. That's pretty incredible. Tell us about this one.
Barry Harrde: We’re calling this year’s ride, “Wheels for the World IV- Piles of Miles”, as it is my longest ride yet in terms of total mileage. I roll out of San Francisco on May 31st, and by the time I reach Portsmouth, New Hampshire on July 21st, I’ll have logged over 4,000 miles. It’s also the highest of the four, in that we cross the Rockies in Colorado at over 11,000 feet.
Your fourth time! Is that a record?
We know for certain that no know one with hemophilia, HIV, and hep C (I was cured in 2010) has ever ridden across America on a bicycle, however, there are a number of guys from the HIV community that have done it. In fact, there are several who have even competed in the Race Across America, which is perhaps the most competitive sporting event in the world. My medical resume also includes a 15-year-old knee replacement and peripheral neuropathy, so we’re quite sure that no one with my particular medical pedigree is likely to top the accomplishment.
Why do you do it when it must be so hard on your body?
I really don’t think of it as something that’s hard on me, rather I think it’s been good for me. The physical conditioning definitely helped me to weaqther the side effects of Interferon/Ribavirin therapy to treat the hepatitis C, and it’s also helped with maintaining healthy joints which people with hemophilia often have a hard time with because of the internal bleeding. Strong muscles and a low body weight help preserve prosthetic joint replacements too, although I haven’t met too many orthopedic docs who recommend quite this level of activity. I’m kind of doing this as a self-appointed Guinea Pig just to see what the potential outcomes may be.
Ha! Do you consider yourself a role model then?
It’s very gratifying and humbling when people use that phrase, but I think the real role models and heroes are the guys who lost their lives to HIV. As we know, there was a time when those living with HIV could ill afford to be public about their status, often even with their own families and friends. Many died miserable deaths and even avoided seeking medical treatment for fear of the stigma and backlash that often accompanied “coming out” as an AIDS or HIV sufferer.
OK, I want to ask you a few questions about your experience of living with HIV in 2015. First of all I’m assuming you are undetectable. When did achieving that happen and how did it make you feel? Has it changed your view of yourself, do you think?
Bob, I’ve been undetectable since the mid-‘90s when the combination therapies first appeared on the scene. In fact, I was able to get there just by using Combivir, the two-drug regimen consisting only of AZT and Epivir. I managed to remain undetectable for over 10 years with that very simple therapy and only began using a three-drug combo back around 2007 when I began treatment for Hep C.
After ridding myself of the hepatitis, my CD4s leapt to the high 800s where they are today, so I’m probably healthier than at any time in the last 25 years, at least according to the lab work. Remaining undetectable for so long certainly helps one to worry less about the possibilities, but of course the jury is still out on what the long-term effects of anti-viral use may be, especially for co-infected individuals who may already have considerable liver damage. I think I worry more about the meds I’m taking than the underlying infection at this point, but there’s not much to do but wait and see.
Over all this time have you personally experienced HIV stigma, Barry? Want to talk about it?
I was diagnosed in 1985, which was a whole other age when it comes to living with HIV. Some may remember Ryan White, who was thrown out of school, persecuted, and even had a bullet fired into his home when it become known to his neighbors that he’d contracted HIV from the blood products used to treat his bleeding disorder. There was also a family in Florida, the Ray family, who had three hemophiliac boys, each of whom contracted HIV from their clotting medications. They too were thrown out of school and when a court ruled that they be allowed to return, neighbors in their town of Arcadia, Florida firebombed their home, burning it to the ground and forcing them to move.
I was able to avoid all that by simply remaining silent for several decades. It helped that I’d already gotten out of high school by the time I was diagnosed. It could have gotten very ugly, though, because in high school, everyone knew I had hemophilia and there was a well known association between hemophilia and HIV, but I always stayed healthy, so I was able to stay in the closet and dodge the discrimination that society was heaping on the AIDS community in those days.
The silence was very hard on me and my brother and brother-in-law, both hemophiliacs living with HIV as well. It also rendered us useless as any kind of advocates for change, which is something I’ve long regretted. It’s what we thought we had to do, though, to protect our jobs (and health insurance) as well as our families.
I see. Has HIV complicated in other ways your personal and romantic relationships?
Yes, it certainly has. PTSD is a term that has come into use in recent years to define the psycho-social effects experienced by many of the long term survivors who have never quite broken loose from the damage leveled by society’s belligerent and reactionary response to the AIDS pandemic in the 80s and 90s. I kept a very low profile in that era and tried to avoid any situations that might expose my medical reality to anyone. Needless to say, that had a disastrous effect in terms of relationships.
At that time, the life expectancy was mighty short if you’d contracted HIV, so in many ways, I just kind of did my own thing and didn’t even bother thinking about trying to get married or start a family. I saw many families and marriages torn apart by HIV/AIDS and that too had a very negative effect. It’s like anything else, though- a diagnosis can bring out the best or the worst in people, and I’ve certainly seen my share of both.
OK, let's look around us. What do you think is the biggest challenge to getting new HIV transmissions under control in North America? What would you do about it?
It seems like the pendulum has swung from one extreme to the other. In the early days, people over-reacted and responded with nothing less than paranoia whenever the spectre of HIV was raised. Now, it seems like there’s this attitude of “well, if I get it, I’ll just take the pills and everything will be fine” mentality, which I think is a little nuts. I’ve even heard of people intentionally engaging in reckless behaviors because they feel “left out” or they want to belong to a certain group of people, which is just crazy. The cost of the meds and their potential side effects ought to be enough to compel anyone to behave responsibly and thoughtfully, not just in terms of themselves but of those they are involved with.
Many of the education efforts launched in the 80s seem to have gone by the wayside and we’re seeing the results of that in the fact that there are still well over 50,000 new infections every year in the States alone, and for a disease which is nearly 100% preventable, that’s pretty sad indeed.
What would be your message then to someone newly diagnosed with HIV, Barry?
I sometimes meet newly diagnosed individuals and they are invariably astounded when they learn that there are people that have been living healthy and productive lives with HIV for more than thirty years. It’s one of the underlying motivations behind my bicycle rides, really- to demonstrate in very obvious terms that HIV is not now nor has it ever been an automatic death sentence.
There are now over 35 medications to control HIV and the search for a cure gains more traction with every passing year, so for anyone recently diagnosed, there is a lot of hope on the horizon and every reason to be optimistic.
So would you personally advise them to start treatment as soon as possible – or wait until they need it?
There is no “one-size-fits-all” approach to HIV treatment decisions. I lived for at least ten years before having even one drug, AZT, to work with and managed to stay healthy. If one decides to delay treatment for whatever reasons, however, I think it’s critically important to monitor CD4 counts to avoid allowing too much disease progression to do too much damage to the immune system. Going into denial and simply ignoring it is not the way to go.
Barry, I wanted to ask you this. Some people say HIV has been the worst thing that ever happened to them, some say it’s the best. Where do you fit on that spectrum of views?
It’s really a mixed bag. Not many people would be envious of the life I’ve had to lead, but on the other hand, I’ve met many incredible people that I otherwise would never have encountered because of my experiences with both hemophilia and HIV.
Vaclav Havel once remarked that “the true test of a man is not how he plays the role he wants for himself, but how he plays the role destiny has for him.” It is also true that in all good there is some evil and in all evil there is some good, so at the end of the day, I think that it’s not so much what happens to you in life that determines your level of contentment, but rather how you choose to respond to your circumstances. We are never remembered for the things we do in life that are easy, but rather the things we do that are just plain hard.
To put it in personal terms, very few amateur cyclists have ever graced the front pages of newspapers or found themselves on the evening news, but I have - not because I’m a monster bike rider, but because of the adversity I’ve had to overcome to pull it off. Additionally, using all of this to raise money for charitable enterprises gives my experiences a whole other value which in many ways, has made it all worthwhile.
Good answer, Barry! Finally . . . where can we learn more about the ride and also follow your progress?
I’d suggest visiting our website at www.saveonelife.net or looking up our ride page on Facebook, which is titled “Wheels for the World”. If anyone is interested in more information, they can also contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. .