Positive Life: Barry Haarde Road Tripping Again
(Positive Life): Bob Leahy: Barry. You’re off on another trip. Tell us about this one.
Barry Haarde: This year’s ride is the shortest but fastest ride of the three and departs from L.A. on Easter Sunday and rolls all the way to Savannah, GA, which amounts to about 2,900 miles over a period of 27 days, two of which are rest days. There are only two riding days with less than 100 miles to ride; one of which is 95 miles and the other, 97 miles, so the pace is fairly brisk.
Bob Leahy: How much have you raised so far in the previous trips and what’s your target this time.
Barry Haarde: We raised about $84,000 with the first two rides and we’re nearing $40,000 already for the third ride, which of course, has yet to even begin, so we’re hoping to exceed our goal of generating at least $45,000 for this year’s effort. We’ve been fortunate to receive some good corporate support; our title sponsors this year are Baxter Biosciences and Bayer Healthcare, both of whom manufacture medications to treat hemophilia, and we have several specialty pharmacies assisting us as well.
Bob Leahy: That's great. Probably a naive question, Barry but do trips like this involve a lot of training?
Barry Haarde: No, I just roll off the couch and go ride across the country… Ha! Gotcha’ didn’t I? Actually, I try to maintain a training schedule of riding at least 200 miles per week year-round and I managed to exceed that goal by a good bit the last two years. I’m a little behind this year with the tough winter we’ve had (even in Houston, TX where I’m from), but not critically so.
Bob Leahy: So is it getting any easier?
Barry Haarde: There’s a saying in cycling; “It never gets any easier, you just go faster.” The effort one makes on the bike is always dependent on those you’re riding with, so if last year’s ride is any indication, I’ll probably be working quite hard.
Bob Leahy: What’s the first thing you do once you finish?
Barry Haarde: I down about three milkshakes and immediately start thinking about the next ride!
Bob Leahy: Ha! You’ve seen some pretty interesting places in your travels. How many states have you visited and what is your all-time favourite.
Barry Haarde: Hmm, now I have to think a bit about that one. I’ve now ridden through or in thirty states and I think that probably my favorites were Oregon and Idaho. New England affords some pretty spectacular scenery as well as Hawaii. My long-term goal is to ride in every state, which should keep me busy for awhile and then we may turn our attention to doing some European rides, also as fundraising efforts for Save One Life, which provides assistance to people with hemophilia living in nations which have little or no access to medications for treating the disorder due to the costs involved.
Bob Leahy: So how has your health been since we last talked? I take it you have a good CD4 and undetectable viral load but what about the other issues?
Barry Haarde: I think we had discussed at one time the fact that I’d successfully treated and cured hepatitis C with nearly four years of on-again, off-again treatment with Interferon and Ribavirin. Well, since clearing the virus, my CD4s have rebounded into the 800s, which is a number I haven’t seen since the mid 1990s! All the other lab work looks pretty good for the moment too. In fact, I’d say that my blood work at this point is pretty-much indiscernible from that of a perfectly “healthy” person.
Bob Leahy: That's great. But how easy is it to forget that you are HIV-positive when you are on one of these road trips?
Barry Haarde: Well, there’s always that once-a-night Atripla pill to swallow, but outside of the neuropathy, I really have no side effects from HIV or the meds at all.
Bob Leahy: Do you have to do anything different than your fellow cyclists other than find time to take your meds?
Barry Haarde: I had to cut the toes out my cycling shoes (which always draws curious looks from other riders) to allow for the considerable pain I suffer in my feet from the neuropathy, but outside of that, not really. I try to be extra careful when riding, in that severe hemophilia and bike crashes are not particularly compatible, but other than exercising a bit of extra caution, no.
Bob Leahy: We have never talked about who is important to you in your life, Barry, and what else you like to do besides cycling. Want to fill us in?
Barry Haarde: Back in 2008, my liver docs had decided that after two failed treatment attempts, I would not be able to cure hep C and that I would soon require a liver transplant or, absent that, I would be dead in a few years. I started thinking a lot about all the hemophilia and AIDS activists that devoted their lives over the past thirty not-so-easy years to making life better for us all, while I had remained steadfastly “in the closet”. I made the decision, a sort of “deal with God”, that if I was somehow able to duck the virtual death sentence, that I would devote all my remaining energy and time to hemophilia and AIDS activism, which is exactly what I’ve done.
Bob Leahy: Riding the bike plays directly into that in that I want it to serve as an example of what can be achieved with the right mindset in dealing with the stigma and misconceptions surrounding both hemophilia and HIV/AIDS. My greatest and happiest moments are now found while attending national hemophilia conferences and speaking at events around the country. I’ve really been traveling around the country a lot and all the movement and interaction with fellow activists is what keeps me going and what I enjoy the most.
Barry Haarde: My only regret is that I’ve not really found an avenue for speaking out and being active in the broader HIV/AIDS community. I’ve been fairly successful at getting many articles published in the hemophilia magazines, but have not yet gotten my story out in the HIV/AIDS publications.
Bob Leahy: There are not so many of us long-term-survivors around anymore, and those of us that contracted HIV through blood products are especially few in number. We are an example of the kinds of colossal failures that can sometimes occur in the medical system if we are not quick to act in the face of emerging threats, and thus, I think our story needs to be heard more.
Barry Haarde: When not on the bike, I still work a full-time job, serve on the boards of the local hemophilia chapter in Houston and the Committee of Ten Thousand, a blood and blood-product safety organization. I also volunteer for the Hemophilia Federation of America. With all that activity, I have little spare time for just kicking back and relaxing or socializing, but it is fulfilling work and helps me to deal with the “survivor’s guilt” that accompanies having seen so many friends and two family members die from AIDS and hepatitis.
In conclusion, I’d like to once again thank the sponsors of my ride this year; Baxter and Bayer, Alliance and Matrix Specialty Pharmacy and all of our “grass-roots” supporters. Thanks and appreciation also extend to Laurie and Martha at Save One Life, the very capable staff of ‘America By Bicycle’, as well as my managers at Hewlett-Packard for assisting with the time off work to complete the ride. Thanks again, PositiveLite.com, for the coverage and we’ll talk again after the completion of “Wheels for the World III”!
Bob Leahy: Yes indeed. Good luck Barry!
Assisting and Advocating for the Bleeding Disorders Community