Pedaling the message that there is life after HIV

 

By Noah Barron

 More photos here.

 

The pedals turn. Sweat beads on their brows. It’s 9 in the morning in Redondo Beach as the first cyclists zip into the parking lot. Paul Serchia and the other Positive Pedalers crew greet the riders with chopped bananas, Clif Bars and cups of blue Gatorade. But the riders aren’t invited to grab the food themselves. Rather, the crew hands it out to prevent the spread of germs because many of the riders have weakened immune systems and catching a cold could seriously jeopardize their health.

 

Despite toned legs, slim, tanned frames and the ability to ride hundreds of miles at a stretch, these bike riders have to be ever vigilant in protecting their health. That is because the Positive Pedalers have HIV and some, including Paul Serchia, have full-blown AIDS.

 

The Positive Pedalers are a group of about 220 HIV-positive cyclists that is participating as a team in the AIDS/Lifecycle bike trip San Francisco to Los Angeles on June 3 through 9^, 2007 and is expected to attract more than 2,000 riders overall. The Pos Peds team was founded 12 years ago by Jonathan Pon and Paul Hulse, both of whom have since died of HIV/AIDS-related illness.

 

The Redondo Beach ride on April 21 was a training session for the longer 545 mile ride. The riders will stay in campgrounds along the way.

 

Serchia was diagnosed with HIV 16 years ago and in his own words, has been very fortunate. He has avoided opportunistic infections, drug interaction problems and many of the other problems that plague HIV positive people. When the combination therapies became available, Serchia began taking several anti-retroviral drugs and has managed to keep his viral load low and his T-cell count in the range between 50 and 200. T-cells are healthy white blood cells whose presence or absence indicate what stage of damage HIV has inflicted upon the body’s immune system.

 

Sechia rides his bike as an unmistakable message to the world. He wears his HIV status literally on his sleeve. The shirt he wore read “I’m Positive,” and he views his bike riding as a demonstration that HIV hasn’t ended his life.

 

“With the Positive Pedalers, we’re all about being active and eliminating the stigma of HIV by showing people that we can do athletic things. I think that’s important.

 

“Just this morning I went to the post office and I walked up to the window and the woman on the other side of the counter stopped and looked at my shirt and then looked at me,” Serchia said.

 

“She said to me, ‘Oh, you’re positive, huh?’ She knew what that meant, but she had to think what does it mean when someone is walking around town with a shirt that says ‘I’m positive’? I kind of enjoy seeing people’s reaction because not everyone chooses to be that out there with their illness.”

 

Coming out with their HIV status was the biggest challenge facing many of the Positive Pedalers. Several spoke of the importance of being a role model for others struggling with the decision to be public.

 

J.R. Billings, 27, joined the AIDS/Lifecycle Positive Pedalers organization before he knew he was positive. He got involved to support a friend and then later discovered he too had HIV.

 

“Stating that you’re positive and being involved in these activities shows that members of the community are doing something and it helps other people to see role models who are struggling with HIV,” said Billings. “Life is not over. Life goes on and you are able to do productive things.”

 

Billings started a MySpace group called Young and Living with HIV because he said that he had trouble finding role models in the under-30 HIV community. The group now has several dozen members.

 

“The younger crowd that grew up during the AIDS crisis…it’s like we knew what it did and we should have known better,” he said.

 

“We should have done more to protect ourselves. There’s a stigma attached to that. To see younger people that are vocal and relaxed about it can be a positive for those that are quietly in the closet with their HIV status.”

 

The best advice Billings was given came from an older HIV-positive friend who told him “Come out to the people who will be supportive of you, not people who you will have to support.” Billings still has not told his parents in the year and a half he has known about his diagnosis.

 

When he’s on his bike though, Billings doesn’t worry, he said.

 

“Once you put the jersey on and the flag on, you don’t think about it until you see it again. I’ve had people come up to me and say, ‘It’s really awesome that you’re doing this and you’re vocal about it.’

 

“That’s the hope—that it gives people hope and inspiration and it changes the view of people that are HIV positive. In between those times, it’s just me riding my bike with my friends and having a good time.”

 

That’s no small achievement. Most of the Positive Pedalers mentioned that there are significant obstacles in the way of making their HIV status public, including fear of losing jobs, losing friends and being treated as a sick person and a social outcast.

 

Some equated their HIV coming out with the experience of coming out of the closet with their sexual orientation.

 

Ross Papish, a Positive Pedaler who has had HIV for nearly a decade said that coming out to members of the gay community about HIV is easier because homosexuals in Los Angeles tend to be more knowledgeable about the disease and its manageability.

 

“Within the gay community, perception has changed. Within the larger community, the perception hasn’t changed. The average person knows very little,” Papish said.

 

Not all Pos Peds struggled to come out. Larry Sartorius, who tested positive in 1992, said that he felt nothing standing in the way. “I was very public in the first month after I tested many years ago. I had no shame about it,” he said.

 

“I got very active in the community, I did a lot of volunteer work. I realized it wasn’t going to kill me. I came right out with it, even at work, every job I’ve had.”

 

Ross Papish described a phenomenon he calls “circling the table,” where riders participating in the Lifecycle ride to support AIDS research will approach the Positive Pedalers booth but not sign up. He says it often takes years for many HIV positive riders to build the courage to don the jersey that reads “I’m positive.”

 

Billings agreed. In the straight world, he said, HIV is still regarded “as a death sentence.” But Billings is still quite healthy and doesn’t need any drug treatments. The only ways his life has changed he said was that he visits a doctor every three months and that he tells all his sexual partners.

 

“I would go on dates and want to just get it out there are you interested in me or not. Eventually, other positive people gave me the advice that I have a lot more to offer than just my HIV status. It took a lot of pressure off. For a short time I was identifying myself by my status and now I don’t hardly ever think about it anymore,” Billings said.

 

The Positive Pedalers participate every year in the 545-mile AIDS/Lifecycle ride, raising money and awareness for the fight against the disease. Each cyclist, whether he or she rides for the Pos Peds or not, must raise a minimum of $2,500 to participate in the trip.

 

Last year, the Pos Peds team raised $8.5 million for the Jeffery Goodman Clinic at the LA Gay and Lesbian Center as well as the San Francisco AIDS Foundation. The funds go to providing treatment and drugs for HIV patients who don’t qualify for medical aid and could not otherwise afford it, as well as awareness and prevention campaigns.

 

Papish and Billings both said that the prevalence of HIV education and prevention that was huge in the late 1980s and early 1990s had drastically diminished.

”There are younger people who are getting infected with HIV. It’s not something that has gone away or stopped in the 80s or 90s,” Billings said. “There isn’t the drive that there used to be to fight for money for research and there still needs to be, though there are drugs that can prolong life, there still isn’t a cure.”

 

But when asked if being given a specific HIV awareness message in the media would have prevented him from contracting the disease, he said he didn’t think so. He says he knew about the dangers but in some cases a verbal statement from a sex partner was enough for him to decide to have unprotected sex. He says he believes the biggest factor in the HIV epidemic in the U.S. is people who do not know that they are positive.

 

According to its Web site, the Centers for Disease Control estimates that there are 476,000 people living with HIV in the United States. Though HIV infection rates have dipped slightly in the last five years among people over 30, infection has increased among Americans between the ages of 15 and 29.

 

Papish said he believed HIV/AIDS has fallen out of charity vogue. “It’s not a pretty issue in politics. Cancer—yes. Violence in schools—yes. HIV—no. It’s an ugly, scary issue.”

 

But for many who participated, there is a larger meaning than simply raising awareness, raising money and expressing pride. For some, like Mark Misch, there is a spiritual component.

 

When he’s on his bike, Misch said he feels “friends of mine lost to AIDS come down in the wind to cheer me on. That’s what going to get me through and remind me there is goodness in the world.”

 

Misch said he rides a yellow bike and sports a yellow jersey because his childhood bike was yellow and it helps him recapture a childlike view of the world.

 

Phil Gonder has similar feelings about the ride. He got his diagnosis a decade ago and has since had several major heart problems. This is his third San Francisco-LA bike trip. He calls the AIDS/Lifecycle his “victory ride.”

 

“I survived massive heart failure. Both sides of my heart stopped working and put me in the hospital for five months and it was all aids attacking my heart. I needed to celebrate,” he said.

 

“When I was recovering after I initially got sick, I kept my bike right by my bed to remind me in one year I’m going to ride you. It’s glorious. Every stroke, every pedal is a thank you.”