Bob Leahy: Hi again Barry. Tell us about your route you will be travelling this time.
Barry Haarde: After completing five trans-continental tours in the U.S., including last year’s 5,000 mile trek from Seattle to Key West in 60 days, we decided to change things up a bit and ride the length of the Alaska Highway. The ride starts at “Mile 0” of the AlCan route in Dawson Creek, B.C. and tracks northwest in to Alaska, finishing near Fairbanks. Then, I’ll be riding an additional 650 miles or so around the state to Anchorage and over to Prince William Sound. All together, the tour should run about 2,100 miles. Then, to top it off, I’ll be getting off the bike and taking a guided tour up the Dalton Highway, better known as the “Ice Road Truckers” road and taking a flight to Barrow which is the northern-most point in the United States. This will “book-end” last year’s tour which finished at the southern-most point in America.
And again the cause you are supporting is what?
Once again, I’ll be riding and raising money for Save One Life, an organization which provides help to people with hemophilia in developing nations who lack access to medical treatments due to their high cost. We’ve raised about $220,000 so far with the past five rides and we hope to continue to build on that.
Amazing. You have to be in good health to keep doing this year after year, Barry. What are your secrets to keeping in good shape, physically fit and mentally alert?
Since treating and curing hepatitis C (which along with HIV, I and many thousands of other hemophiliacs contracted in the ‘70s and ‘80s from our blood products), I’ve ridden the bike about 65,000 miles including the five cross-country rides and all the training miles built in around them. As far as we know, I’m the only person with hemophilia to complete a cross country trip by bicycle. As a result of the hemophilia and associated bleeding into the joint, I had to have a knee replaced back in ’99. I’m also now a 35+ year survivor of HIV and have liver cirrhosis from the hepatitis. So, needless to say, I DO have a number of potentially debilitating health issues which, in fact, have taken the lives of thousands of our affected population. Somehow, I’ve survived and I attribute that, at least somewhat, to the physical conditioning developed from all the cycling in addition to maintaining a reasonable diet, not smoking, minimal alcohol, and NO drug use.
I’m always interested in what people do or eat or don’t do even though they know it’s not healthy. We all have to have some unhealthy habits. Tell me about yours.
Back in the ‘80s, during the hey-day of discrimination, fear and paranoia surrounding HIV/AIDS, I did my best for a number of years to drink myself out of existence. Some of our guys even committed suicide, so horrible was the way the AIDS community was being treated by society in general. As the attitudes about HIV began to change over the years, however, I began to think more positively about my situation and then in ’07, after the death of my brother from hep C, I finally went public with my story and my HIV status. Life improved dramatically after that and that is when the concept for a cross-country bike ride was originally hatched.
As I mentioned earlier, I keep the alcohol to a minimum and absolutely no smoking or dope. My diet is pretty flexible as I burn up so many calories doing the rides, so I can eat like a horse and get away with it!
This is your 6th major ride as a person living with HIV and Hep C and promoting both causes. Do you find the public’s reaction to one is different to the other? I’m thinking particularly that the stigma associated with each may be different but other factors too?
Hepatitis C is often thought of and referred to as the “forgotten virus” or the “unknown virus”, which is not good since it can potentially kill you just as easily as HIV. The great news is that there are incredibly effective treatments now with no side effects associated with them, which was not true just a few years ago. Hepatitis C can also be cured as opposed to HIV, which of course, can only be treated and controlled.
I think the stigma associated with both Hep C and HIV has largely evaporated over the years, but traces of it still remain. There’s always that, “well, how’d you get it?” look that pops into people’s eyes when discussing it, which makes it very difficult for many to disclose or even get tested. I’m sure I have an easier time of it, since I contracted the viruses from blood products, but there was a time when we shared in the discrimination and prejudice endured by the gay community and those who’d been exposed through experimenting with IV drugs. The last thing anyone needs when confronting a chronic illness is be subjected to a bunch of judgments and condemnations which simply compound the emotional stress of dealing with the illness(es).
How exhausting is a ride like this?
I’ve found that I and other riders tend to get progressively stronger throughout the long tours, which may seem counterintuitive, but seems to be true nonetheless. I think the fundraising and the preparations beforehand are arguably more stressful than actually getting down to the riding itself. We never know who our sponsors will be or if we’ll raise enough money to make the effort worthwhile, etc, so it requires a bit of faith just to dive into one of these efforts. I’m never more content than when I’m on the road, though, and if it were possible, I’d never stop riding. It’s a great escape from reality and the joy of doing it for a great cause and bringing inspiration to other people is well worth the effort.
I’m guessing you have an undetectable viral load. That means you can’t transmit HIV to anyone. How does that make you feel?
In a word, “great”! When I was diagnosed in ’85, there were no medications AT ALL and the early meds to arrive were quite toxic and difficult to use. Now, there are over 35 antiretrovirals to choose from, many of which are condensed into a single once-a-day pill which makes treatment compliance a lot easier and the side effects are nothing like they once were. I really think we may live to see a cure for this thing in another ten years or so, fingers crossed.
How old are you now, Barry? This must all be getting harder? Ever had thoughts of retiring from all this?
Nope! It’s true, now that I’m closing in on 52 years of age, the long miles do not come quite as fast or as easily as they did a few years ago and the recovery time seems to take a little longer, but I’m nowhere near giving it up yet.
A few years ago, I had the pleasure of riding with a gentleman, aged 76, who completed every mile of a cross-country ride and we did it in 33 days, which meant we were riding over 100 miles per day, some days over 130! I coined the term “the two least likely to succeed” for the two of us, given his age and my health problems, but we both finished pretty easily.
I think there are a lot of misconceptions about the limitations imposed by aging- maybe the next stereotype I’ll be working on breaking after trying to clear up some of the misconceptions about hemophilia, HIV, and hep C. Maybe I should appear on “Mythbusters”. Is that show still on? Either that, or the other show, “I Shouldn’t Be Alive”!
We hear a lot about HIV and aging and the future ahead for people living with HIV as they become older adults. What are your thoughts on what needs to be done to accommodate an aging generation of people living with HIV?
It IS a frequent topic of discussion these days as HIV patients are living so much longer with HAART. Managing HIV alongside all the other problems one encounters with getting older can be quite difficult and I’m not sure it’s being studied enough. I’m especially concerned about cognitive disorders such as poor concentration and memory loss that are often associated with long-term antiretroviral use. It’s just going to be yet another battle we’re going to have to fight going forward.
Historically, the gay community and the hemophilia community have enjoyed considerable success in driving research and access to treatment and healthcare through grass-roots activism, and those efforts will need to be continued by current and future generations if we’re going to succeed in eventually eradicating HIV/AIDS and adequately care for the ever-growing population of older people living with HIV. “Silence = Death” is just as true today as when the phrase was coined back in the 1980s.