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Team Spirit: Some of the Team Santa Cruz AIDS Ride members as they prepare for a practice run. Team Captain Mary Ann Daly is in the 5 o'clock position. Photograph by George Sakkestad Ride to Win While AIDS deaths are down, HIV is spreading as fast as ever. AIDS riders are pedaling as fast as they can to keep up. By John Yewell THE BATTLE CRY in the war against AIDS used to be Silence=Death, but a lack of information is no longer the problem. We are overwhelmed by it. Hundreds of websites are devoted to it, and a search turns up dozens of daily newspaper stories a week. With nearly half a million Americans dead and no cure in sight, hardly a person or an extended family has been left untouched. But after 19 years, information overload is paradoxically contributing to a drop in public interest. The vaunted combination therapies of antiviral drugs, introduced four years ago, have brought a steep drop in the death rate, but this good news has only contributed to a false sense of security. We are all, in a sense, living with AIDS now. But this complacency is largely domestic, rooted in a culture that routinely denies death. Thanks to economic and cultural factors that vary from country to country, the disease rampages around the world, most especially in Africa. Meanwhile, HIV infection rates in this country have not decreased, and are particularly pronounced among young people and minorities. And there is evidence that the new treatment options are becoming less effective, with the result that death rates may have bottomed out and be on the rise again. Yet with people living longer, healthier lives, AIDS fundraisers say it is difficult to persuade people that the need--especially due to the cost of the drugs--is greater than ever. Meanwhile, surveys indicate that the success of the treatment is making it harder to convince people at risk, especially the young, to continue to avoid risky sexual behavior. It is getting harder to remind people that AIDS is deadly. It is getting harder, in short, to keep people caring. At least one event has defied the trend. With every death--or in some cases, with every life prolonged--more people are drawn to it. To longtime participants, it is part fundraiser, part road show, part social experiment and part pilgrimage. To the people living with AIDS who are its beneficiaries, it is a godsend. Barebacking Roulette: Boys just wanna have fun, and say they understand the risks. But are they really ready to pay the ultimate price? New Challenges: AIDS activists and policy makers face complacency and major changes in the populations they serve. Heroic Vignettes THE CALIFORNIA AIDS Ride is one of six such rides in the country. Now in its seventh year, it's also the oldest. It is also one of the most successful private efforts to raise money for direct services to AIDS patients in the country, at least according to its organizers. The ride began in 1994 with 478 riders. This year that number will be closer to 3,000 riders, who will depart from Fort Mason in San Francisco on June 4 and arrive 575 miles and six days later in L.A. on June 10. Each rider must raise at least $2,500, and the event is expected to bring in at least $9.5 million for the San Francisco AIDS Foundation and the Los Angeles Gay & Lesbian Center. Some 650 volunteers will move a mobile city every night with tents, showers, sinks, toilets and other gear, while providing three meals a day, medical services, bike mechanics and even evening entertainment. The first stopover, the night of June 4 (also, coincidentally, Gay Pride Day in Santa Cruz), will be at Harvey West Park, home turf of Team Santa Cruz. Fifty-three team members have spent months taking part in weekend group practice rides, rain or shine, to prepare. They have one HIV-positive peddler (there is a group known as the "posipeddlers" that takes part in the California AIDS Ride each year), and most have done the ride before. This year will be Cally Haber's second ride. When the young Live Oak woman discusses her her first year, small, heroic vignettes bubble to mind. For Haber, it is a traveling circus with heart and soul, a Bay-to-Breakers for gear heads. "One guy rode up and down the same hill over and over again, just to encourage people," she relates. "Another guy rode alongside a woman and helped push her bike up a hill, so she wouldn't have to get off and walk." Another, she says, rode pulling an empty child's trailer with stories inside, symbolizing a child that had died of AIDS. For riders in trouble, help is never far away. Haber says once she stopped alongside the road and had to give a thumbs up to everyone who passed to keep from being overwhelmed with offers for help from people who thought she had a flat. And then there are the lighter moments, like the time in Paso Robles when a local hairdresser offered free shampoos, or when one rider stopped at an ice cream store, gave the proprietor $60 and asked him to give out as much free ice cream as he could to passing cyclists. "Suddenly you heard all these screeching breaks," laughs Haber. "People were holding up ice cream cones and shouting, 'It's free!' " Each year, at the end of the ride up the Avenue of the Stars in Century City, a riderless bike symbolizes those lost to the disease. For Sunnyvale environmental consultant Paula Lewis, it was seeing those closing ceremonies two years ago that got her involved. "It was so emotional. I signed up right there. I knew it was something I had to do." She did it the following year and is back this year for more. Everyone on the ride has some kind of personal connection to relate. Lewis's partner had a brother who died of AIDS. Seeing her partner participate in the ride in his memory helped Lewis decide to do so. But Lewis says she learned something even more fundamental from the experience. Despite the long lines for everything and the occasional inconveniences, it was the community of the ride that counted. "For a week, the ride is how the world should be," Lewis says. "It's as much about overcoming apathy as it is about raising money." Follow the Money THE EVENT and it promoters have not been without controversy. San Francisco AIDS Foundation head Pat Christen and her $175,000 salary have come in for criticism. And some local AIDS health-care workers and advocates lament that none of the money raised by local ride participants returns to the community in which it is raised. Betsy McCarty, Santa Cruz County public health chief, is concerned that none of the money donated locally is spent locally. "The AIDS Ride is a wonderful thing, but people locally may not know that we don't get any of it," McCarty points out. "It's a touchy issue, because we want as much money to stay local as we possibly can. I don't begrudge them per se, I just know what needs we have here." Cathy Conway, development director for the Santa Cruz AIDS Project, or SCAP, applauds the AIDS ride, but says she too wishes some of the money was being returned to the communities in which it was raised. "A lot of money is being raised that's not helping our community," Conway says. Still, she says, "the ride is a great thing." Its successful example may ultimately benefit SCAP. Two SCAP board members, Jeri Ross and Damon McGuire, are also Team Santa Cruz riders. They say that preliminary talks have been held to stage a local fundraising ride. Conway also wonders whether AIDS ride donors know that none of the money will be spent locally. Short of interviewing every donor, that's a tough question to answer. But among ride participants interviewed for this article, each said he or she was aware that none of the money they raised would return to AIDS organizations in their community. It's unlikely that each rider made a point of communicating that to each donor, but for riders it seemed to be a nonissue. Besides, McCarty says, local people also benefit from the SF AIDS Foundation, which does not exclusively serve AIDS patients in San Francisco. "The SF AIDS Foundation is one of the best in the business, and we do use their resources," McCarty says. For Team Santa Cruz member Rosemary Anderson, the importance of the AIDS ride goes beyond money. "I can't think of another vehicle that has been as effective in mobilizing communities," she says. "It promotes the idea that AIDS is very much in the forefront and affects all of us." Anderson will not take part in CAR 7, she says, opting instead to do a special Alaska ride in August devoted to raising funds for an AIDS vaccine. But when her friends pull into Harvey West Park on June 4, it will be special for her nonetheless. Eleven years ago on June 4, Anderson lost her brother to AIDS. She took part in last year's ride as a memorial to the 10th anniversary of his death. "I thought it was a good way to honor him." Photograph by George Sakkestad For the Love of It: The spirit of the AIDS Ride is bringing Team Santa Cruz member Cally Haber back for her second time. A Dubious Anniversary WHEN THE RIDERS DEPART Santa Cruz on June 5 for their next stop, in King City, few will take note of a grim anniversary. Scientists estimate that the virus that causes AIDS was first transmitted from monkeys to humans around 1930, although the oldest surviving human tissue found to contain the human immunodeficiency virus dates only to 1959. It wasn't until the spring of 1981 that the suspicions of Dr. Michael Gottlieb, a young immunologist at the UCLA Medical Center, were aroused. Over a period of a few months, five young men, all gay, had come to him with suppressed immune systems and opportunistic infections. Gottlieb wrote up his findings, which were published June 5 that year in the Centers for Disease Control digest known by the cheerful title Morbidity and Mortality Weekly Report. It was, in essence, the day we discovered AIDS. America had come roaring out of the permissive '60s and '70s and hit a viral wall. At first, it seemed as if herpes was the worst thing that could happen, as far as sexually transmitted diseases were concerned. But ever so slowly, we were awakened to the presence of a new, far deadlier snake that had slithered into the Garden. Within nine months more than 250 cases, and 100 deaths, would be reported nationwide. But homophobia and indifference prevented the kind of concerted government reaction that was needed to stem the tidal wave of infection. As late as 1995, Sen. Jesse Helms was quoted saying that AIDS was the result of "deliberate, disgusting and revolting conduct." Even three years into the epidemic, with 5,000 diagnoses and 2,400 deaths, the public health response was minimal--certainly nothing like the mobilization that had occurred in 1976, when daily headlines chronicled the story of 29 people who had all stayed in the same hotel in Philadelphia and died of what would become known as Legionnaires' disease. By 1985, AIDS had cut a wide swath, mostly through the gay community: More than 12,000 had become sick, and 6,000 were dead. It was now four years since Gottlieb's report, and still the acronym AIDS had not yet passed the lips of the president of the United States in public. That year would prove to be pivotal. A test for antibodies to HIV became available, which at least made it possible to identify the infected and protect the nation's blood supply. But no treatment was available, and discrimination against those who were HIV-positive was common. Even more important for public awareness, Rock Hudson died of AIDS on Oct. 1. One result was that his friends, Ron and Nancy Reagan, could no longer look the other way. That was the year the first person I ever knew with the syndrome, the manager of our East Palo Alto apartment building, learned he had it. Being an upbeat guy, he deflected the death sentence he'd been handed with breezy confidence. He was going to be the first person to beat it, he said. He wasn't. The Minorities View THE GOOD NEWS, after 19 years, is that there is good news. Since 1981, 711,000 AIDS cases have been reported in the U.S., of which 420,000 have died. But since 1997, a year after powerful combination drug therapies became available, the diagnosis and death rates have fallen dramatically. Out of 408 cases reported in Santa Clara County in that time there have been only 38 deaths. In Santa Cruz County, out of 61 cases reported since June 1997 there has been only one death reported by the county health service. But the numbers are an illusion. Early, aggressive treatment of HIV-positive people delays the onset of the infections that define AIDS, artificially depressing the number of cases. With HIV status not reportable (to encourage anonymous testing), and with the successes in treating the infection as a chronic condition prior to a diagnosis of AIDS, diagnosis and death rates have been rendered virtually meaningless. But the infection rates remain disturbing. Nationally, the news for young people, women and minorities is particularly alarming. The Centers for Disease Control announced in January that for the first time the percentage of minority gay men with AIDS exceeded that of whites, 52 to 48 percent. And although the minority population is only 28 percent of the total, 69 percent of all AIDS cases are minorities. Studies suggest that cultural factors inhibit many minority men who have had sex with other men from identifying themselves as gay--24 percent among blacks and 15 percent among Latinos, compared to 6 percent for whites. As a result, they don't tend to consider themselves at risk to get--or spread--the disease. Women now account for 24 percent of all AIDS cases, up from 14 percent in 1992 at the peak of the pandemic. Seventy-five percent of women get it from heterosexual sex. The overall heterosexual transmission rate is now hovering near 15 percent. In 1985, heterosexual cases were below two percent, although much of that was ascribed to transfusions of tainted blood. And 25 percent of all new cases in the U.S. this year will be teenagers. Even the good news sometimes has a dark side. Nationally, AIDS deaths between 1996 and 1998 dropped 65 percent for whites, 60 percent for Latinos and 53 percent for blacks, suggesting that some people have better access to the drugs that can prolong their lives. Statistics in Santa Clara County reflect national trends. From 1998 to 1999, the percentage of white AIDS cases fell from 52 to 41 percent. While cases among blacks and Asians dropped slightly, the percentage of AIDS cases among the county's Latino population jumped from 30 to 41 percent of all cases, pulling even with whites even though they make up a much smaller percentage of the population. A Continental Collapse THE REALLY BAD news comes from oversees. A recent United Nations AIDS study paints a bleak picture of AIDS around the world, where access to medical care is more expensive and cultural stigma even more pronounced than in the West. Some 50 million people worldwide are estimated to be infected with one of the two strains--HIV-1, the dominant strain in Africa, or HIV-2, which predominates in the U.S. and Western Europe. Each has a dozen genetic subtypes. Almost 34 million people are now living with AIDS, of whom 1.2 million are children under 15 and 14.8 million are women. Over 16 million have died, and there are an estimated 5.6 million new infections each year--one every 5 1/2 seconds. While AIDS is spreading everywhere, from Southeast Asia to Eastern Europe, it is in Africa, which has 10 percent of the world's population but 70 percent of its AIDS case, that the real catastrophe is playing itself out. In April, the Clinton Administration became so alarmed at the numbers that it declared AIDS in Africa a threat to the national security of the U.S. In sub-Saharan Africa, where the primary cause of transmission is heterosexual sex, 13 million have died and 55 percent of all people with AIDS are women. Sub-Saharan Africa will lose a quarter of its population to AIDS by 2010. In 1998, 200,000 died in the various wars on the continent, while 2.2 million died of AIDS. By the end of this year, AIDS will have created 13 million orphans, 95 percent of whom will be in sub-Saharan Africa. Of course, few African governments can afford to spend the $6.7 billion the U.S. government alone spent last year on AIDS-related research and services, and few individuals can afford the huge expense of the antiviral therapies available in the U.S. Western drug companies have come in for harsh criticism for putting profits ahead of lives around the world, especially in Africa. But in the last month the drug companies have changed their tune, spurred on by a most unlikely of organizations: The WTO. A World Trade Organization rule known as "compulsory licensing" allows poor countries to grant licenses to domestic companies to manufacture drugs that are under patent in other countries. A second WTO policy, known as parallel importing, allows countries to import a drug from the cheapest source, not necessarily from the country in which a drug is patented. Taken together, these rules have the potential to bring down drug costs by providing a worldwide market for cheaper drugs. The drug companies have fiercely resisted these rules. But early in May, a sequence of political events was set in motion that may dramatically alter the drug availability landscape for poor countries. After a Senate/House conference committee dropped an amendment from a bill known as the Africa Growth and Opportunity Act designed to incorporate WTO rules into U.S. law--under pressure from the pharmaceutical lobby--President Clinton issued an executive order saying that the U.S. government would not seek to overturn laws in sub-Saharan Africa that provide greater access to AIDS drugs. Two days later, five major drug companies announced in London that they would make steep cuts in drug costs for certain countries. British-based Glaxo Wellcome said it would drop the price of its antiviral drug Combivir from an average of $16 per daily dose down to just $2 in poor countries. Within days, on May 15, the House passed a bill directing the Treasury Department to negotiate with the World Bank to set up a trust fund to fight AIDS in sub-Saharan Africa. Fitting Tribute: Rosemary Anderson got involved in the AIDS Ride in memory of her brother, who died of the disease. Photograph by George Sakkestad The Illusion of Health AS RESEARCH INTO HIV and AIDS progressed in the 1980s, increased knowledge of the biomechanics of the virus--and the increasing death toll--finally jolted many Americans into an appreciation of the seriousness of the threat. For many years, a paranoia set in that has since faded. And that, say some today, is the problem. "The old horror stories of the 1980s didn't pan out," says the University of Pennsylvania's Art Caplan, one of the country's foremost medical ethicists. "The Black Plague didn't happen." Long-term survivors, like former basketball star Magic Johnson--now shilling, ironically, for 24-Hour Fitness--have given us a false sense of security, says Caplan, even as the explosive disease threatens to overwhelm medical systems and even whole economies. The complicated antiviral treatments, with their precise instructions and timetables, have given the appearance of reduced risk. Some HIV-positive people have seen their viral loads reduced to undetectable levels, and their T-cell levels return to normal. Estimated HIV transmission rates in San Francisco fell from over 5,000 a year at the height of the epidemic to 500 per year most recently, luring the uninformed into false expectations and giving rise to increased risky behavior. It didn't help that magazine covers were carrying headlines proclaiming the end of AIDS, or that a high-profile case like Magic Johnson at one point even pronounced himself cured. Some researchers, hoping that rates could fall even lower to around 250 per year in San Francisco, are alarmed. They believe the drug therapies are only having an offsetting effect on increases in unsafe sex. Even more alarming, positive results from anonymous testing in San Francisco between 1997 and 1999 jumped from just one percent to 2.8 percent--nearly a three-fold increase. Considering a recent study in the journal AIDS, it isn't surprising. The study disclosed that 25 percent of the gay men surveyed engaged in unprotected anal sex with men whose HIV status was either unknown or the opposite of theirs. A New Outbreak? IN RESPONSE, the San Francisco AIDS Foundation is fighting back the only way it can--with slogans, like its "Do Ask, Do Tell" ad campaign. Long-term weapons are limited, because researchers know that currently there is no real hope of knocking out the virus completely. "Eradication is impossible with current treatment," says Mark Hoffman, a health education specialist with Santa Clara County. Many of the antiviral protease inhibitor drugs, he explains, can't cross blood/brain barriers, where much of the virus is hiding. It's for this reason that most researchers agree that the prospect of AIDS becoming a chronic manageable condition is an illusion. Dr. Arnie Leff, known to many in Santa Cruz County as the AIDS Doc, inclines to that opinion. "It's possible," he says hopefully, "but we don't know that." Hoffman, who is HIV-positive, puts in perspective the notion that low viral load makes unprotected sex less risky. Even very sophisticated and expensive tests (involving a spinal tap and a lymph biopsy) have limits to their sensitivity, going down to about three parts per million. There are millions of blood cells in a single drop of blood containing enough copies of the virus to spread the infection even at undetectable levels. And lower viral load may itself be temporary. According to a study by Sally Blower, an epidemiologist at the University of California at San Francisco Medical Center, HIV mutation and the resulting resistance to current drug therapies, combined with increasing unsafe sexual behavior, could result in infection rates increasing faster than new drugs can inhibit them. "People are still dying, and there's a resurgence of unsafe activity," Leff points out. "My perspective is that all groups are being blasé. In fact, heterosexual transmission is a big problem, especially worldwide." One Life at a Time THIS YEAR THERE WILL be five other AIDS rides: the Twin Cities to Chicago; Boston to New York; rides in Texas and Washington, D.C.; and a special ride for a vaccine in Alaska. Combined, they are expected to raise in the neighborhood of $28 million. The six previous California rides raised a total of $45 million, of which 63 percent, according to the SF AIDS Foundation, went to client services. This year will be Marilyn Doyle's third AIDS ride. The San Jose program manager for Novell remembers being moved one day on a previous ride by school children waving to the riders and giving them flowers as they passed. This year, she says, she wants to take the pace a little slower. "One little girl asked 'do you all have AIDS?' " she recalls. "I want to stop and talk more." Team Santa Cruz member Brian Kenerson, a Capitola mortgage broker, recalls a woman in her late 30s or early 40s he has seen each of the last three years. She sits in a beach chair with an umbrella, a little black dog by her side, alone in the middle of nowhere, near the Hunter Liggett military reserve north of Paso Robles. The first year, in 1997, he says she looked OK, although she was crying. The next year she was there again, but she didn't look good and seemed very weak. Last year, Kenerson saw her again, only this time she looked much better. He stopped and talked. She was getting the antiviral drugs--with the help of money raised on the ride, he believes. Team Santa Cruz member Tiffany Frandsen also remembers seeing the woman last year, and how it brought home for her the individual lives touched by the ride. "I was riding along, in a desolate area, and there was this woman sitting with a rainbow flag in the middle of nowhere, tears streaming down her face," Tiffany says. "And she just said, 'Thanks for riding for me.' " [ Santa Cruz | MetroActive Central | Archives ]