Word was getting out through the addicts' crude networks, though the talk was as much hearsay as science. By 1984, more than half of the city's IDUs were worried enough about the virus to change their injection routines, said Don Des Jarlais, a highly regarded drug researcher who serves on the National Commission on AIDS. But unfortunately, the changes usually were things that only reduced, and did not eliminate, risks, such as refusing to share needles with obviously ill people.
By and large, the addicts were on their own against the tide. In those early years, society spun in place, its public officials immobile against a blood-born contagion. It was clear that IDUs were in for a slaughter; after all, they received a mini-blood transfusion every time they shared a needle. But a determined rescue of such pariahs was hard to gear up. AIDS had little voice against the ongoing din of the War on Drugs.
"Our response was inadequate," reflected Dr. James R. Allen, director of the National AIDS Program Office of the U.S. Public Health Service. "The decision to emphasize law enforcement was being made by people whose concern was not the health of the nation."
The epidemic was lowering its scythe among gay men and IDUs. "Certain folks saw this as a comeuppance," said Jones of the CDC. "There was a lack of compassion that was fairly broad-based, in particular for the (drug) injectors, who tended to be poor, black, Puerto Rican and other Hispanics."
At the National Institute on Drug Abuse (NIDA), government publications were forbidden to mention that heroin users were at a special risk for AIDS. "There was a sense of prudishness," said Dr. Marvin Snyder, acting deputy director. "The idea was that it was unseemly to talk about dirty needles."
The late Mel Rosen was the first director of the state of New York's AIDS Institute. In 1985, he wanted to send outreach teams into the city's shooting galleries to instruct people how to clean syringes. "(City officials) told me they would arrest me and my entire staff," Rosen recalled recently, just before his death. "I was dumbfounded."
The gay community rallied to help itself, but this was not likely among drug addicts, their ache for the next shot so dominating, their social isolation so great. They did not have a voting bloc, good jobs, organizations. There was no IDU pride week and no insistent marches up the boulevards.
In August of 1988, for the first time, new AIDS cases among IDUs and their sex partners outnumbered those of homosexual and bisexual men in New York City. By then, it was becoming common around the nation to refer to intravenous drug use and AIDS as the "twin epidemics," the one madly feeding the other. Public health experts were insisting that more be done. But what?
There was no way to herd more addicts into existing drug programs. Snyder, of NIDA, said the treatment system had not improved in 20 years: "We have compassion for heart patients, but nothing but contempt for drug users. That's very sad. Addicts basically have a brain disease. Their brains have been modified so they can no longer make free choices when it comes to heroin."
If dope fiends were continuing to shoot up, maybe the risks for infection could be reduced by dispensing bleach kits and needles. Many other nations were doing that, but America by and large balked. How would it look, the government providing junkies the means to antiseptically shoot up narcotics?
Eventually, the distribution of bleach did become common nationwide, though the Los Angeles County supervisors did not permit it until last year. Several "needle exchanges" came into being, but while some are legal, most--as in Los Angeles--are the out-of-a-car-trunk operations of a dedicated underground.
For the most part, the IDUs remain a neglected million. In 1990, the AIDS working group of the American Public Health Assn. warned that more delays in drug treatment and HIV prevention "will mean suffering and death for thousands of high-risk individuals, their sex partners and offspring."
At present, the infection rate among IDUs is generally stable, which is both the good news and the bad. In New York, the percentage has leveled off at that ghastly 50%. There are 4,000 to 5,000 new infections each year to replace the people who quit using drugs or who die, Des Jarlais said; nationally, there are 15,000 to 35,000 infections annually that are related to injecting drug use.
Some cities are faring better than others. This depends on the number of heroin addicts they have and their rate of infection. Newark, N.J., and San Juan, Puerto Rico, endure problems as bad as New York's.
In Los Angeles County, there are an estimated 80,000 to 190,000 drug injectors, but the HIV infection rate is only around 6%. No one is sure why the percentage is so low, though some reasons have been suggested. The virus came later to the city, arriving after most junkies had begun taking precautions.