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This doesn't happen often with Deca-D. Its users inject 100 milligrams into deep muscle -- usually the buttocks -- once a week or every other week. The steroid attaches to androgen cells, then is carried to the nucleus of a cell. There the molecule tells the DNA to convert into messenger RNA (mRNA). The mRNA next delivers its message to muscle cells, which respond by increasing protein synthesis. This is what causes cell growth and growth in muscle tissue.
Use of Deca-D, though, is not without risks. The drug increases red blood cell counts and so thickens blood to sometimes dangerous levels, Wohlfeiler explained. This condition makes the heart work harder and can lead to cardiac arrest, especially among patients on protease inhibitors, because those also build up cholesterol levels and fat in the body. So patients are usually advised to use Deca-D in twelve-week cycles, with several months' rest period in between.
Bill Sullivan began using Deca-Durabolin in 1992. He claims the drug helped save his life in the nightmarish days before protease inhibitors, when his five-feet-eight frame withered to less than 125 pounds.
"I put weight on as soon as I started using [Deca]," Sullivan says. "Back then I really thought I was dying. Now I don't look like an AIDS patient."
Deca-D, known in gyms worldwide as the king of steroids, was originally developed to treat aplastic anemia, a virulent form of the disease. The drug's positive effects are, however, offset by the bad reputation it gained as bodybuilders, Olympic athletes, and Mafia goons (Sammy "the Bull" Gravano and John Gotti Jr.) beefed up by injecting and injecting and injecting.
Although Deca-D was never officially recognized by the medical establishment as an AIDS treatment, word spread among the HIV networks mentioned above that steroid use was actually helping people to survive. Soon D use, whether prescribed by a doctor or not, surged.
"When I first began to speak about it, it was heresy," says Nelson Vergel, an anabolics advocate and chemical engineer who was first diagnosed with HIV in 1987. "It was like I was talking about using crack or crystal [meth]."
But the desperation among AIDS patients eventually overcame Deca's bad rep. This generated a new market the drug wasn't intended for. In pharmaceutical jargon, this is called "off-label" use. So HIV-positive Deca-D users were stunned when Organon stopped producing the drug in May. Getting a prescription now is virtually impossible.
"They dropped [it] without telling anybody," Vergel says. "We were pissed. They stopped without giving any reason."
Organon spokeswoman Fran DeSena says the company stopped making Deca because the product no longer fit into the company's "profile." Organon, she says, is shifting all efforts to the booming market for drugs that combat depression (Prozac, for example, sold $186 million in the first quarter of 2002 for Eli Lilly and Company).
"There are no plans in the future to make another version [of Deca-Durabolin]," DeSena declares.
According to Food and Drug Administration sources, the stoppage of Deca-D doesn't constitute an emergency because there are other steroids on the market such as oxandrolone and stanozolol, as well as an alternative form of Deca-D, nandrolone decanoate. To date, only two companies -- GulfSouth Rx, a Mobile, Alabama pharmacy that makes "generic" versions of drugs in its own lab; and Watson Pharmaceuticals in Corona, California, which has recently re-entered the market in a small way -- are known U.S. sources for the alternative. While GulfSouth sells its version of Deca-D at a lower price than Organon ($12.50 compared to Organon's $32 per dose), it does not accept medical insurance (making payment tougher on users), and its formula may be different from the original. Watson charges $38 per dose, and (according to an employee speaking anonymously) "may only manufacture the drug temporarily." That's because it's responding to a call from the FDA to fill a need, but has no real long-term interest.
GulfSouth pharmacists refute their critics, saying that while they may not know Organon's exact formula, they use the same base compound to produce their product. Sam Kelly, the pharmacy manager, says they get their nandrolone from Hawkins Pharmaceuticals, the same company that provided the compound to Organon.
"Nandrolone is nandrolone is nandrolone," Kelly says. "Clinically, it's identical."
At Watson, the quality is likely to be higher because the manufacturer is a known pharmaceutical, industry watchdogs say.
Against the evidence, Vergel and other AIDS activists remain wary of Organon's motives -- suggesting it pulled Deca only to capitalize on future off-label use dissatisfaction by patients, who might then be lured back to a different-named D at a higher price. But given the number of people -- nearly 800,000 -- living with AIDS in the U.S., and the estimated users of Deca to combat HIV wasting -- under 150,000 -- the profit motive doesn't seem a strong one.
In any case, DeSena denies the charge: "There is no further discussion," she concludes.
"This is just one more hit against the HIV-AIDS community," says Marc E. Cohen, president of the United Foundation for AIDS, a nonprofit agency with outreach programs and clinics in South Beach.
He points out that PWAs and their advocates have been battling pharmaceutical companies for increased access to effective and affordable medicines since the onset of the disease: "Alternatives to Deca-D are either risky or not available," Cohen says. "So naturally our patients are tremendously fearful of what their outcomes will be."