Bob Leahy: Hello Barry, It’s a pleasure to talk to you. PositiveLite.com readers will recall we featured your story here and now you have something new to talk about. You're about to start cycling across North America, from west to east, right? I want to talk about that in a minute, and I’m excited your tour includes a little piece of Canada, but first I want to delve in to your story, if that’s OK with you. Now your story has similarities with Vaughn Ripley's, whom we interviewed a few weeks back. You know Vaughn right? He sounds like a great guy.
Barry: I first learned about Vaughn when I ran across his book, Survivor, on Amazon. We met for the first time last year and have done some cycling together. He and I both “came out” about the same time and our stories are very similar. He wants to ride across America too, and he may be the only guy I know from the generation of hemophiliacs that contracted HIV that is in shape to do it.
Forgive me if I ask you two similar question but I’m actually really curious about how people who received tainted blood feel about that now. Do you still hold a grudge, or have you let that go. I mean there must have been anger, right?
It’s been so many years now that I’ve really tried to let go of the bitterness as I’ve gotten older. There was plenty of anger to go around in those days; the 1980s, I mean. We were dropping like flies during that era because there was little research into AIDS, no meds, and very little hope. At first I, and many others, blamed the gay community for spreading the disease. Then, later on, we began to learn about “who knew what and when did they know it” in the pharmaceutical and blood collection industries, and many things came to light as the years went by about just how much of it could have been prevented. There were lawsuits that dragged out for decades and a class-action suit that went all the way to the Supreme Court. Even the National Hemophilia Foundation, our own advocacy group, was a named litigant in the initial lawsuits. It was a very painful time for everyone involved, but as I said, I’ve tried to move away from the anger and focus on more positive things and the cycling and my spiritual faith helps a lot with that, I think.
Do you want to talk about how you found out you were HIV – positive? You were only nineteen, right?
That’s right. People with hemophilia were known as the “canaries in the coal mine” for the blood supply, because we consumed enormous amounts of blood and blood-derived pharmaceutical products that were manufactured from pooled lots of more than 10,000 donors. So, when AIDS entered the blood supply in the early 80s, we were sitting ducks. The first AIDS deaths in hemophiliacs were confirmed by the CDC in July of 1982, but there was no definitive test for HIV, then called HTLV-III, until ’85 when most of us were tested. My brother and brother-in-law also had hemophilia and all three of us tested positive. I was notified by mail of my positive status - no counseling or anything like they have today. I still have that letter to this day.
Oy! And your reaction was what?
We were not terribly surprised. I’d had a knee surgery in ’82 (the worst of all possible years) and used a ton of factor-8 and some whole blood too. We’d already been seeing in the news that hemophiliacs were dying of the new disease, but there was so little reliable information available that no one really knew what to think. We just knew it wasn’t good at all.
So did you and your family go to great lengths to keep the news quiet?
It was months before we even told our extended family members. After Rock Hudson died of AIDS, all of America went hysterically crazy. People with AIDS were being thrown out of their churches and schools, fired from their jobs, and many could not even obtain housing or medical care. Perhaps the most egregious act of discrimination was when the Ray family, who had three boys with hemophilia and AIDS, had their home in Arcadia, Florida fire-bombed and burned to the ground. They had been outed by the pastor of their church and then the town formed a coalition to drive them out of town. The Rays didn’t move, so their home was torched. Two of the boys later died from AIDS and their father, Cliff, attempted suicide. And everyone remembers Ryan White and the persecution he and his family endured before he died in 1990. Some of our guys in the hemophilia community did not even seek medical treatment because of the all the fear and paranoia. They got sick and later died; some committed suicide. I told a few close friends about my diagnosis, but for the most part, I kept it very much to myself.
At what point did you decide to come out. What provoked it? Was it hard?
I came out in ’08 after my brother died from hep C/liver failure at the very same time I had begun Interferon treatment myself, and it wasn’t working. The docs were telling me I was headed for some really bad stuff. None of my friends at the time knew anything about my medical history; I didn’t even tell anyone I had hemophilia, so I felt I had no one to turn to. I reached that point that recovering addicts refer to as “rock bottom”. I was thinking about suicide a lot and just wanted it all to be over. But, I could never do that kind of thing to my family, so I just hunkered down and held on as best I could. I knew I had to make some big changes. Coming out was really the hardest thing I ever did, but in retrospect, it later proved to be the best thing I ever did and I have no regrets. Sometimes I wonder if I’ll ever be able to get another job or if I’ll ever have another girl-friend; but that just goes along with it.
I think your story is unusual, Barry, in that others in your family were contending with similar heath crises. You’ve seen other family members die from HIV or from hepatitis C, in fact. Why do you think you are still alive?
Of all the questions I’ve had to ask myself in this life, that is probably the toughest. There is a lot of “survivor’s guilt” among long-term survivors. Of the nearly 10,000 Americans with hemophilia who contracted HIV/hepC in the ‘80s, only 2,000 are still alive, so yeah, I really wonder sometimes why I got picked to hang around. It’s why I’ve dedicated myself to hemophilia and HIV activism. It’s also the primary motivator behind the ride across America; you know, to try to make some kind of difference in the world. The ride raises funds for Save One Life, whose mission is to bring aid and comfort to people with hemophilia in developing nations who have no access to medications because of their high cost.
Now you’ve also had to contend with Hepatitis C. For those of us who don’t know, does co-infection make HIV treatment more complicated - and vice versa?
Co-infection with HIV is a negative predictor of treatment success for hep C. I was also well into liver cirrhosis, which also lowers the odds of successful treatment. I did not respond to Pegylated Interferon and had to resort to daily injections of Infergen, a genetically modified interferon. All things considered, I probably had less than a 10% chance of curing the hep, but somehow, I was able to pull it off.
You are clear of Hepatics C now though, right? Was the process hard on you?
Yes. The meds for hep C have a very similar side effect profile to chemo. I was on and off the drugs for nearly four years and they completely alter your body chemistry while on it. It can cause severe depression and many people go out on disability because they can’t work. I developed really bad allergic reactions to the Interferon, but eventually developed a tolerance for it and was able to complete therapy and clear the virus. I kept working through the whole thing and even stayed on my bike, though I backed off the serious training and long miles.
I want to turn to cycling now then, Barry. You told the story in your earlier article with us about how you took up cycling and eventually progressed to longer and longer runs. Tell me why you do it – and would you describe yourself as obsessive about cycling now?
"Obsessive" is probably the ideal term! Cycling, for me, is the ultimate act of denial. There is no way I should be able to do what I can do on a bike, and that just drives me that much harder. I like cycling because of its inherent purity. Out on the roads, there is no prejudice or fear, no bigotry or discrimination. There is only you and the open road. If you can’t keep up with the group, it is simply because you haven’t worked hard enough - not because someone told you that you couldn’t do it. Every time I drop a guy who’s perfectly healthy and never had to face anything like what I’ve had to deal with, I get a perverse sense of satisfaction. Cyclists are a great bunch of people and we tend to look out for each other out on the roads. It’s the one and only place where I’m just as good as anyone else (and often better) and no one has any idea there’s anything wrong with me, and I really need that sometimes. A lot of guys my age just don’t have that option, and I know how lucky I am in that regard.
Does the prospect of getting injured worry you, Barry, given your health issues?
Somewhat, but it’s a risk I willingly assume. Considering everything I’ve faced and survived, I’ve come to believe that I must have a really committed guardian angel or something. I’ve had some really close calls out on the road, but I’ve never gone down yet.
Let’s talk about the big ride you are embarking on. It’s across North America right? How many miles is that?
It’s 3,667 miles from Astoria, Oregon to Portsmouth, New Hampshire and takes 49 days to complete. No one with hemophilia has ever crossed the country by bicycle, so I’m really looking forward to being the first to attempt and hopefully complete it.
You are clearly up for the challenge. But do you think it will be hard on you?
I’ve ridden over 13,000 miles in the last sixteen months to train for the ride and I’ve got the right equipment to get it done. My chief concerns are the occasional twinges of knee pain I get in my good knee and in the one that’s been replaced; it’s a little bit of intermittent tendinitis I think, and then I’ve got peripheral neuropathy in my feet that gets really excruciating after 100 miles on the bike. I had to cut the front of my bike shoes out with a hacksaw because my toes were hurting so bad. I get a lot of comments from other cyclists on the weird shoes, and that gives me an opening to tell my story and do a little impromptu AIDS awareness while I’m out training!
Your route passes through Canada, right? The area you’re traveling through – you clip south-west Ontario - is a fair stretch away from where we at PositiveLite.com call home base, so we won’t see you as you pass through our country. I’m seeing what we can do about some of the locals in London, Ontario saying hello though. Have you been to Canada before, by the way?
Years ago, I made a living as a professional trombonist and I did some touring with the Tommy Dorsey band and a couple of Broadway shows. I played in Vancouver for a week and I remember we hit Thunder Bay and Kitchener and probably a few other stops that slip my memory. The bike tour rolls through London and Brantford and then crosses back into the States at Niagara Falls. As beautiful as I remember the countryside to be, I’m sure it’s going to be a whole lot more amazing when viewed from the seat of a bike.
I see you have a day in Niagara Falls by the way. I recommend the Maid of the Mist. It’s a boat ride, touristy but great fun – and it’s cheap. An absolute must-do while you're there.
I’ll have to check it out. I’ve been through Niagara Falls and remember thinking that they could have done a better job of keeping the development and the touristy businesses back away from the actual falls, but it was still an amazing sight nonetheless.
OK. You start the ride June 17. You’ve been training hard. What does it feel like on the verge of the ride?
So much time has been consumed with the fundraising and getting the word out and all the logistics and details worked out, that I’m really looking forward to just getting on the bike and cranking out the miles. There is some nervousness, of course. It feels a little like when I left home and went off to college or when I moved out to Texas to start a new life and get a new job. I have a strange sense that all of the stuff that’s happened to me in my life and all the thousands of lonely hours out on the roads on the bike have somehow converged and that my whole life up to this point has finally realized its true purpose, which is what we’re all searching for anyway.
Tell me about why you are riding. It’s for Save One Life, isn’t it, which you can learn about here, but tell me how much you want to raise and why you chose this charity.
Save One Life’s founder, the resourceful and lovely Laurie Kelley, is a big fitness nut, and she recently accompanied a team of climbers up Mt. Kilimanjaro in a similar fundraising effort. I’m a sponsor through Save One Life already, and it just seemed like a good fit for the trans-American bike ride. The finish line is within minutes of Laurie’s home and the Save One Life office in Cambridge, Mass. We’re hoping to raise $50,000.
Your fundraising page is here. How are you doing so far?
With the addition of Baxter Biosciences International, a manufacturer of hemophilia medications, as presenting sponsor, we’ve raised over $18,500 so far and we’ve yet to send out our fundraising letters. The ride has yet to begin, and we hope that the donations will pick up that much more once I get rolling.
It looks like the focus of your ride is on people with hemophilia, and what is possible. But are you also riding to make a statement about HIV - and about what HIV-positive people can do?
Absolutely. There is still this prevailing myth out there that an HIV diagnosis means your life is over. It’s ludicrous, of course. I’m a 30+year survivor and I’ve never been sick a day in my life. My viral counts have been undetectable since I can remember, yet few people seem to realize that HIV can be managed and suppressed to that degree in most cases. I’ve never considered myself to be a “victim” of HIV and I don’t really even resent having it; what I DO resent is the way society has treated HIV-positive people and all the stigma and fear that have surrounded the disease for decades. I think guys that are physically active like I am can do a lot to dispel the ignorance by achieving goals like the ones I’ve set, and I plan to devote the remainder of my life to furthering our cause in this manner.
Barry. You are amazing. Good luck on your ride. We want to hear all about it when you get back.
Thanks, Bob, and thanks for the great questions and the opportunity to promote the ride. I’ve longed to reach out to the broader AIDS community, but just haven’t found the opportunities as of yet, so thanks for providing a platform to do so.
Barry Haarde, 46, lives and works in Houston, TX and lives with severe hemophilia A. He participates in numerous local cycling events, including the MS150 bike ride from Houston to Austin. He serves on the board of the Committee of Ten Thousand and the Lone Star hemophilia chapter. For inquiries, contact Barry at