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In the salt-and-pepper years of his middle age, Bill Sullivan is fit, ruddy, and strong. Retired and living now in South Beach, the former Washington, D.C. bureaucrat has the muscled-up bod men half his age dream of. His squared shoulders tug at his shirts; his biceps burst his arm holes; his legs, once pathetically frail, are now sinewy, well-defined.
Sullivan is a long-term AIDS survivor, doing everything he can to stay healthy until a cure for the disease is discovered.
His image -- not all that unusual now -- transcends the old AIDS stereotypes of purple-splotched (Kaposi's sarcoma) gauntness, premature death-camp pallor. Since the introduction of protease inhibitor therapies such as Viracept, Crixivan, and Norvir in the mid-1990s, thousands of men and women wasting away from the slew of infections HIV unleashes have made similar comebacks. Traces of HIV in their bloodstreams have become virtually undetectable. Their disease is approached by health professionals as a manageable illness now, like diabetes.
But there is another, more controversial tactic that is transforming once-withered PWAs (Persons With AIDS) into muscle-bound survivors: although not recognized in official AIDS treatment lists, anabolic steroids are used in combination with testosterone to prevent "wasting." While many activists and physicians criticize anabolic therapy as a superficial "beautifying" agent in the war on AIDS, not directly affecting the retrovirus, patients such as Sullivan have come to believe their weekly injections are a lifeline that keeps them strong.
But the brand-name drugs Deca-Durabolin and Depo-Testosterone, most used by AIDS patients, were recently removed from the market by their manufacturers. While Pharmacia-Upjohn, New Jersey maker of Depo-Testosterone, promises to bring it back, the manufacturer of Deca-D, New Jersey-based Organon, Inc., says it has no intention of doing so.
AIDS patients who use Deca-D call the corporate decision another case of exploitation. They suspect Organon will reintroduce the drug under a new name and market it to HIV patients at higher prices. Organon press rep Fran DeSena denies the allegation. Deca-D was last priced at $32 for a 200-milligram dose. With once-a-week injections, this cost the average patient roughly $125 a month. Since marketing research sources estimate Organon's yearly sales of Deca at five million dollars (the company refuses to reveal sales volume or number of patients), it would seem likely that profitability was inadequate to hold Organon's interest.
The stoppage has left thousands of AIDS patients hoarding their supplies and frantic about their futures. Sullivan has enough Deca-D to last him through September. After that runs out, he admits he'll be scrambling for alternative sources.
"I don't know what I'm going to do," he says.
Since AIDS first appeared, survival in the affected groups has depended on the circulation of information -- both official and underground -- among patients and their supporters. Those affected by HIV have learned how to get drugs and treatments that aren't available in the U.S., or that aren't approved. In the desperate days before protease inhibitors, PWAs watched as much-touted therapies, like the highly toxic drug AZT, wreaked havoc on already-fragile immune systems. People were literally dying of the cure for AIDS. Soon word-of-mouth led to networks of "buyers' clubs," primarily among gay men, and patients began, often with the help of sympathetic physicians, to work out their own anti-HIV regimens.
Today one can find buyers' clubs that promote everything from marijuana use to cabbage juice to illegal medicines from Poland as remedies for AIDS-related infections. In the same manner, Deca-D users are now using the Internet to buy unapproved carbon copies of the drug, often veterinarian-grade steroids from Germany, Brazil, Mexico, and Venezuela, according to pharmaceutical researchers such as Larry Sasich, from Ralph Nader's Public Citizen, a Washington, D.C. watchdog organization.
While steroids are legally prescribed in the U.S., treating AIDS wasting with Deca-Durabolin has been an underground phenomenon since the mid-1980s. The practice commenced when Los Angeles physician Walter Jekot began treating dying patients with the drug and posting his findings on the Internet under the name "Dr. X." Thousands of PWAs across the country began using the drug to stave off wasting syndrome, in which patients lose weight at alarming rates and are unable to retain nutrients.
Lean muscle mass is an indicator of health. Muscle tissue helps maintain energy levels the body needs to convert proteins and nutrients, during metabolism, into energy. When the energy required begins to deteriorate because of lack of absorption of nutrients, healthy muscle tissue weakens and dwindles. Once you can't sustain your muscles, malnutrition, generally referred to as wasting, begins.
AIDS-related wasting is one of the facets of the disease yet to be fully understood. While the new drug therapies help patients survive longer, wasting is still a risk. Deca-Durabolin helps prevent that, its proponents say, because it develops lean muscle mass regardless of how the immune system is doing. This "artificial" bulk, in turn, helps keep energy levels -- and patients' self-confidence -- high.
Anabolic steroids, such as Deca-D, have chemical structures similar to the male hormone testosterone. While steroids are not recommended to replace testosterone, they enhance the effects of the hormone by juicing muscle growth and increasing strength. Users of other steroids often experience side effects such as increased hair production, lowering of the voice, enlarging of the Adam's apple, and acne. The drugs can inversely metabolize and increase levels of estrogen, the female hormone, leading to testicular atrophy and the growth of breasts, not muscle, in men, says Dr. Michael Wohlfeiler, a leading Miami AIDS specialist.