San Francisco Chronicle - Monday December 25, 1989
Randy Shilts

Key battles on both the scientific and social fronts of the epidemic were waged and won this year.

Advances in the treatment of HIV-related diseases renewed hope that the time is not distant when AIDS will shift from a fatal condition to a manageable chronic disease. At the same time, the hysteria and fear that marked earlier years of the epidemic ebbed substantially, vastly reducing the chance that the long-feared backlash against people with AIDS will ever materialize.

For all the optimism, however, profound challenges remain unaddressed. Support for the type of federal spending increases that marked the early years of the epidemic showed signs of erosion, leaving a host of crucial programs with no hope of adequate financing in the years ahead.

CONFLICTING TRENDS

Two important AIDS stories that broke in recent weeks clearly illustrate these two conflicting trends.

One was the announcement three weeks ago that Tulane University researchers had successfully inoculated eight monkeys against a simian version of the AIDS virus, offering hope that a vaccine against HIV may ultimately be possible.

The vaccine headlines largely obscured a far more ominous report that was issued a day earlier by the National Commission on AIDS. The report scolded the Bush administration for doing little to stem the tide of AIDS among drug addicts, and went on to warn that the nation remained unprepared for the avalanche of AIDS cases that will fall on the medical system in the next few years.

The juxtaposition of the long-term hope for a medical solution to HIV against the ravages America can expect in the short term meant that, for most Americans, the problem of AIDS will get worse before it gets better.

THE BIG BREAKTHROUGHS

The search for the long-elusive AIDS vaccine captured the most public attention in recent weeks, but the most dramatic scientific breakthroughs this year have been in the arena of treatments for those who already are HIV-infected.

The most significant medical developments were the success of two studies sponsored by the National Institutes of Health. One showed that AZT could slow the immunological devastation of the human immunodeficiency virus in people with AIDS-related complex. The second study, released in August, found that AZT could delay the onset of disease among healthy HIV-infected people.

The licensing of aerosolized pentamadine -- which effectively prevents Pneumocystis pneumonia, long the greatest killer of AIDS patients -- also offered another weapon in doctors' armamentarium against HIV.

A MEDICAL PARALLEL

"The best comparison to where we're going is with hypertension, which is a medical condition that can kill the patient, but which can also be controlled by medication so the person can live a normal life," said National Cancer Institute director Dr. Samuel Broder. "HIV is not yet a manageable chronic disease, but that's where we're heading."

The rapid-fire medical advances brought renewed pressure on government regulatory bodies, particularly the Food and Drug Administration, to cut red tape that sometimes has blocked treatments from being released to patients.

For example, when the year began, the FDA was refusing to license two treatments: aerosolized pentamidine for Pneumocystis and ganciclovir, a drug that prevents AIDS-related blindness. Although virtually every AIDS expert believes them to be extraordinarily effective, the FDA resisted approving the drugs because neither had been tested in a placebo-controlled study in which untreated patients would be allowed to go blind or contract pneumonia to prove the drug's worth.

Pressure bore down on the FDA from all sides.

A new generation of militant AIDS advocates from such groups as the AIDS Coalition to Unleash Power (ACT-UP) produced rowdy protests and articulate spokesmen to challenge FDA orthodoxy in the news media. They found unexpected allies at the National Institutes of Health from such luminaries as Broder and associate NIH director Dr. Anthony Fauci. There was also a sympathetic audience within the new Bush administration where deregulation was a cherished goal.

ASTONISHING TURNABOUT

The result was quick licensing for the two drugs. New rules indicated an FDA flexibility on AIDS drug approval that would have been unimaginable just a year ago.

By the summer, Fauci was able to maneuver his plan for a "parallel track" of AIDS drug release -- in which unapproved experimental drugs would be given to patients outside traditional studies -- through the federal government.

Such moves broke the regulatory logjam that had long pitted advocates for those with AIDS against government doctors in both the FDA and NIH.

Still, the slowness of the process with which the NIH tested promising new drugs continued to create friction. The competing interests of scientists yearning for methodically collected "clean data" and patients wanting timely treatment collided in May when Project Inform began its own trial of the new AIDS drug, Compound Q.

The "renegade research" was conducted wholly outside normal research and regulatory channels and represented a brazen challenge to the authority of the FDA.

Scientists denounced the study when two patients, one in New York and another in San Francisco, died during the process, although it is arguable that either death could be blamed to actual use of the drug. Leaders of Project Inform argued back that information was needed on the drug's effectiveness and potential toxicities faster than was coming from the cautious official studies conducted at San Francisco General Hospital.

Necessity forced their hand, they said, because the underground AIDS network had become so sophisticated that thousands undoubtedly would be taking the new drug without such information. As one of the doctors participating in the study, San Francisco's Dr. Alan Levin, was fond of saying, "The government studies are like the post office. We're Federal Express."

ENTER COMPOUND Q

In this sense, Compound Q became a paradigm for all the ethical complexities of science in the age of AIDS. The government's decision to allow greater access to AIDS drugs represented an acquiescence to a situation where patients would probably end up taking whatever drugs they wanted with or without official sanction.

The Bush administration also showed itself amenable to compromise in other social policy issues related to AIDS. The president's support of a federal ban on HIV-related discrimination -- after years of staunch opposition by President Reagan -- allowed the bill to sail through the Senate on a 76-to-8 vote.

Such policies revealed the Rockefeller Republican leanings of the Bush administration on social policy, but there was little willingness to shift from the tight-fisted posture of the Reagan years on issues that involve new federal spending.

DEPRESSING TREND

This gets to the more depressing trend to emerge in AIDS this year: The inability to mobilize the federal government for the pressing challenges in the areas of AIDS care and prevention.

Assistant secretary for health Dr. James Mason found this out when he publicly asked the government to make available AZT and prophylactic treatments for Pneumocystis to the 1.4 million HIV-infected Americans whose lives could be prolonged and perhaps saved by such early intervention.

Although such programs would undoubtedly save tens of billions of dollars in hospital costs down the road, they also would cost billions now. Mason reportedly received a harsh dressing down from Richard Darman, the president's budget director, for proposing them publicly without White House clearance.

"I think we're suffering from lowered expectations after the past eight years" of President Reagan, says Dr. June Osborn, director of the National Commission on AIDS. "The changes we've seen on social issues from President Bush is promising. But we also have issues that are going to need money to address."

That money, however, is not forthcoming. Although President Bush supported a 25 percent increase in AIDS money for the current fiscal year -- to about $1.6 billion -- neither Bush nor the Congress seem inclined to give much more next year, meaning the level of AIDS spending is going to level off, even as cases have soared into the hundreds of thousands.

BIG-TICKET ITEMS

Meanwhile, most public health officials -- including the government's own top experts -- are calling for a number of big-ticket items.

Their proposals include early intervention programs; prevention programs geared toward minorities in the inner cities, expanded treatment programs for drug addiction so addicts can escape the threat of HIV infection through drug use and increased support for cities hard-hit by the medical costs of caring for staggering AIDS caseloads.

Nobody knows how such ambitious projects can be financed. Without new revenues, the only way AIDS can get more money is to take funds away from other domestic programs.

"There's very little cuttable that's left -- we've been cutting other programs for years," said Steve Morin, who works on AIDS issues for U.S. Representative Nancy Pelosi, D-San Francisco. "1990 is going to be a difficult year."

THE DEATH TOLL

The monetary problems unfold against a backdrop of ever-mounting deaths. In July, the tally of Americans with AIDS surpassed 100,000; in August, the numbers who have died exceeded the number of American servicemen killed in the Vietnam War. As of the end of November, 115,158 cases had been diagnosed; 68,441 people had died.

Among the dead was a roster of the celebrated: photographer Robert Mapplethorpe and choreographer Alvin Ailey, tax crusader Paul Gann and Amanda Blake, who played Miss Kitty in the TV show "Gunsmoke." Others, such as C. K. McClatchy, the highly respected publisher of the Sacramento Bee, were found to be among the HIV-infected after they died of other causes.

In San Francisco, the epidemic was particularly relentless. About 1 percent of the city's population -- or 7,562 cases -- have been found to have AIDS since the epidemic was discovered in June 1981. Of these, 4,941 have died. Typically, at least three people died of AIDS in the city every day in 1989.

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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