1997 Pulitzer Prizes-National Reporting

Medicine
AIDS Fight Is Skewed By Federal Campaign Exaggerating Risks



By Amanda Bennett and Anita Sharpe

In the summer of 1987, federal health officials made the fateful decision to bombard the public with a terrifying message: Anyone could get AIDS.

While the message was technically true, it was also highly misleading. Everyone certainly faced some danger, but for most heterosexuals, the risk from a single act of sex was smaller than the risk of ever getting hit by lightning. In the U.S., the disease was, and remains, largely the scourge of gay men, intravenous drug users, their sex partners and their newborn children.

Nonetheless, a bold public-relations campaign promised to sound a general alarm about AIDS, lifting it from a homosexual concern to a national obsession and accelerating efforts to eradicate the disease. For people devoted to public health, it seemed the best course to take.

But nine years after the America Responds to AIDS campaign first hit the airwaves, many scientists and doctors are raising new questions. Increasingly, they worry that the everyone-gets-AIDS message --still trumpeted not only by government agencies but by celebrities and the media --is more than just dishonest: It is also having a perverse, potentially deadly effect on funding for AIDS prevention.

The emphasis on the broad reach of the disease has virtually ensured that precious funds won't go where they are most needed. For instance, though homosexuals and intravenous drug users now account for 83% of all AIDS cases reported in the U.S., the federal AIDS-prevention budget includes no specific allocation for programs for homosexual and bisexual men. And needle-exchange programs, widely seen as among the most effective methods available in fighting infection among drug users, are denied any federal funding.

Much of the Centers for Disease Control's $584 million AIDS-prevention budget goes instead to programs to combat the disease among heterosexual women, college students and others who face a relatively low risk of becoming infected. Federally funded testing programs alone, which primarily serve low-risk groups, account for roughly 20% of the entire budget.

Some scientists charge that tens of thousands of infections a year could be averted if only practical assistance were directed to the right people. Instead of aiming general warnings at non-drugusing heterosexuals, these critics say, the government should use the bulk of its anti-AIDS money to teach homosexual men to avoid unprotected anal sex and to dissuade addicts from sharing infected needles.

"You can't stop this epidemic if you spend the money where the epidemic hasn't happened," says Ron Stall, associate professor of epidemiology at the University of California in San Francisco. Helene Gayle, who is in charge of AIDS prevention at the CDC, agrees that "increasingly, it is important to shift strategies to meet the epidemic." She says that the CDC, by giving communities more freedom to decide how to spend federal AIDS money, is now seeking to direct more help to those who need it most.

But she defends the CDC's pivotal decision in 1987 to emphasize the universality of AIDS: "One should not underestimate the fear and confusion this disease caused early on," Dr. Gayle says. "We needed to build a base of understanding before we could go for the jugular."

Certainly, powerful political and social forces at work nine years ago made it nearly impossible for health officials to focus attention on those most at risk, a reconstruction of events of that year shows. And though, as Dr. Gayle says, the CDC is now trying to revamp its AIDS-prevention efforts, the same forces that shaped public policy in 1987 are making it difficult for the government to change directions, even now.

By 1987, CDC officials already had a fairly clear picture of where and how AIDS was spreading -and how much risk different groups faced. The disease was proving less likely to be transmitted through vaginal intercourse than many had feared. A major study that was just being completed put the average risk from a one-time heterosexual encounter with someone not in a high-risk group at one in five million without use of a condom, and one in 50 million for condom users.

Homosexuals, needle-sharing drug users and their sex partners, however, were in grave danger. A single act of anal sex with an infected partner, or a single injection with an AIDS-tainted needle, carried as much as a one in 50 chance of infection. For people facing these risks, it was fair to say AIDS was truly a modern-day plague.

A key player in the CDC's earliest AIDS-prevention efforts was Walter Dowdle, a virologist who was a veteran of the war on herpes and had helped create the CDC's anti-AIDS office in the early 1980s. Like most people in his operation, he understood that AIDS had to be fought hardest in the places it was most prevalent.

But by the spring of 1987, Dr. Dowdle had already been rebuffed repeatedly in efforts to prepare AIDS warnings aimed directly at high-risk groups. TV networks were refusing to air announcements advocating the use of condoms. And Dr. Dowdle had failed in his attempt to disseminate a brochure that mentioned condoms as effective in slowing the spread of AIDS. At the time, all AIDS material had to be cleared by the president's Domestic Policy Council, and the Reagan White House objected to pro-condom messages on moral grounds. The 1986 brochure went into the White House for review and never came out.

Searching for clues about how to proceed, CDC officials began a series of internal meetings at their red-brick headquarters on Clifton Road in Atlanta. They also reached outside for high-powered marketing help, retaining Steve Rabin, then a senior vice president of the advertising giant Ogilvy & Mather. In August, Mr. Rabin, openly gay and deeply committed to the effort, ran focus groups in a half-dozen cities to gauge attitudes toward the disease.

The results were discouraging: In city after city, the focus groups made clear that concern about AIDS hadn't taken hold in much of the country, despite the widely publicized announcement two years earlier that Rock Hudson had the disease. With some exceptions in big cities like New York and San Francisco, homosexuals continued to engage casually in unprotected sex, as did heterosexuals everywhere. The prevailing attitude: It was somebody else's problem.

For gays and drug users, this view was flatly wrong and potentially fatal. Moreover, the focus-group results highlighted a huge policy issue: Would the public support funding for AIDS prevention and research if the majority of heterosexuals believed they and their families were only minimally at risk? Would they be compassionate toward the victims of the disease?

Poll data suggested otherwise. A 1987 Gallup Poll showed that 25% of Americans thought that employers should have the right to fire AIDS victims. In that same poll, 43% felt that AIDS was
a punishment for moral decline. In meetings within the CDC, many people, including Messrs. Dowdle and Rabin, expressed particular concern about the growth of housing and job discrimination against people with AIDS.

It was in this environment that the idea of presenting AIDS as an equal-opportunity scourge began to form. Politicians, including Republican Sen. Jesse Helms of North Carolina, were blocking campaigns aimed at gays anyway. And homosexual and minority groups were concerned about being linked too closely with the disease. Some CDC scientists, watching the spread of the disease among heterosexuals in Africa, worried that AIDS might yet make inroads among non-drug-using heterosexuals in the U.S. In any event, CDC officials believed that fighting AIDS was everyone's responsibility, even if everyone wasn't equally at risk of getting it.

"We were drawing on gut instinct," recalls Paula Van Ness, who had come to the CDC after serving as chief executive of the AIDS Project, a community program in Los Angeles. "The aim was, we thought we should get people talking about AIDS and we wanted to reduce the stigma." Earlier, in Los Angeles, she had reached out directly to high-risk groups: "Don't go out without your rubbers!" warned a motherly woman in one announcement the AIDS Project had sponsored. But now, on the national scene, she too felt that such a direct approach was impossible.

Dr. Dowdle, burned by the response to his earlier, more targeted efforts, agreed with his colleagues that the CDC's best bet was to present AIDS as everyone's problem: "As long as this was seen as a gay disease or, even worse, a disease of drug abusers, that pushed the disease way down the ladder" of people's priorities, he says.

After considerable soul-searching and debate, officials fixed on a dramatic approach they believed would do the most good in the long run: a high-powered PR and advertising campaign to spread a sobering yet politically palatable message nationwide.

In subsequent meetings in the summer and fall of 1987, the CDC team developed the idea of filming people with AIDS and building a series of public-service announcements around what they had to say. Subjects wouldn't be identified as gay, and the dangers of intravenous drug use would get little attention.

Early on, the staffers stumbled on their defining slogan when they interviewed the son of a rural Baptist minister. As Ms. Van Ness recalls it, the man said, "If I can get AIDS, anyone can." His remark "wasn't scripted. That's what he actually said." Other similar public-service announcements were prepared, all with the same personal approach. "If you want your audience to be more receptive about this, you had to touch their hearts," Ms. Van Ness says.

The CDC's award-winning campaign, deftly pitched to a general audience, was launched in October 1987 and featured 38 TV spots, eight radio announcements and six print ads. The initial ads steered clear of specific advice on how to avoid AIDS, instead focusing on the universality of the disease and counselling Americans to discuss it with their families.

It wasn't until the spring of 1988, when the government mailed its "Understanding AIDS" brochure to 117 million U.S. households, that the risks of anal sex and drug abuse were underlined. But even this brochure accentuated the broader risk; it featured a prominent photo of a female AIDS victim saying that "AIDS is not a `we' `they' disease, it's an `us' disease."

As public relations, the CDC campaign and parallel warnings from other groups proved to be remarkably effective, particularly because these messages were reinforced by various public agencies and the media. According to one poll, during the last three months of 1989, 80% of U.S. adults said they saw an AIDS-related public-service announcement on television. Millions of people were thus sold and resold on the message: Though AIDS started in the homosexual population it was inexorably spreading, stalking high-school students, middle-class husbands, suburban housewives, doctors, dentists and even their unwitting patients.

In late 1991, Magic Johnson dramatically boosted the perception that everyone was at risk when he announced that his infection was due to promiscuous heterosexual behavior. Talk shows and magazines pursued the theme relentlessly. Even late last year, Redbook magazine --written for a largely middle-class female audience -carried a major story about married women called, "Could I have AIDS?" In it, the author wrote: "My mind automatically telescopes to AIDS every time I get sick."

Meanwhile, the CDC itself was producing research that made clear that heterosexual fears were exaggerated. And some CDC scientists, including then-epidemiology chief Harold W. Jaffe, publicly railed against the everyone-gets-AIDS message and urged that assistance be targeted to those who most needed it. But his opinion, along with the internal research on which it was based, was typically drowned out by the countervailing mass-media campaign.

Fear of AIDS spread --and remains. Gallup surveys show that by 1988, 69% of Americans thought AIDS "was likely" to become an epidemic, compared with 51% a year earlier, before the PR campaign got in full swing. By 1991, most thought that married people who had an occasional affair would eventually face substantial risk.

Yet, as CDC officials well knew, many of the images presented by the anti-AIDS campaign created a misleading impression about who was likely to get the disease. The blonde, middle-aged woman in the CDC's brochure was an intravenous drug user who had shared AIDS-tainted needles, although she wasn't identified as such in the brochure. The Baptist minister's son who said, "If I can get AIDS, anyone can," was gay, although the public-service announcement featuring him didn't say so.

Ryan White, perhaps the epidemic's most compelling symbol, had been diagnosed in 1984, at the age of 13, after receiving a transfusion from an AIDS-tainted blood-clotting agent used in the treatment of hemophilia. Barred by his school, shunned by neighbors, he emerged with his family as a forceful opponent of discrimination against AIDS patients. But five years before he died in 1990, the availability of a blood test for the human immunodeficiency virus, which causes AIDS, had nearly eliminated the infection from America's blood-products supply. (Similarly, activist Elizabeth Glaser, who spoke at the 1992 Democratic Convention, was infected through a blood transfusion well before AIDS testing began.)

Meanwhile, Kimberly Bergalis became famous for a particularly rare case: She and five other Florida patients apparently acquired their infections from their dentist, who later died of AIDS. But although the CDC has tracked down and tested thousands of patients of hundreds of HIV-positive doctors and dentists, that single Florida dentist remains the only documented case in the U.S. of a health professional's passing the virus on to patients.

Research continued to show that AIDS among heterosexuals had largely settled into an inner-city nexus, a world bounded by poverty and poor health care and beset by rampant drug use. AIDS was also on the rise in some poor rural communities. Yet government ads typically didn't address the heterosexual group at greatest risk, a group that a CDC researcher would later define as "generally young, minority, indigent women who use `crack' cocaine, have multiple sex partners, trade sex for `crack' or other drugs or money, and have [other sexually transmitted diseases] such as syphilis and herpes."

Though scientists and anti-AIDS activists knew that the government-nurtured fear of AIDS among upscale, non-drug-using heterosexuals was exaggerated, not everyone thought this was a bad thing. Indeed, many credited rampant fear with achieving pro-family goals that no amount of moralizing alone could have accomplished. In a 1991 Gallup Poll, 57% of respondents said they believed that AIDS had already made their married friends "less likely to fool around." Singles reported being less apt to have one-night stands and more reluctant to date more than one person.

Moreover, there was no question that even mainstream heterosexuals bore some risk of AIDS and that greater caution would reduce their already-low rate of infection. "I don't see that much downside in slightly exaggerating [AIDS risk]" says John Ward, chief of the CDC branch that keeps track of AIDS cases. "Maybe they'll wear a condom. Maybe they won't sleep with someone they don't know."

The marketing campaign also appeared to be having another key desired effect: to mobilize support for public funding of AIDS research and prevention. Federal funding for AIDS-related medical research soared from $341 million in 1987 to $655 million in 1988, the year after the CDC's campaign began. (This year, the figure stands at $1.65 billion.) Meanwhile, the CDC's prevention dollars leapt from $136 million in 1987 to $304 million in 1988; $584 million was allocated for 1996.

Even the gay community, though not specifically targeted for assistance, began to see the wisdom of the everyone-gets-AIDS campaign. "This was a time of decreases in government funding," according to Jeff Amory, who headed the San Francisco AIDS Office in the 1980s. "Meanwhile, AIDS money was increasing."

It took a while before people realized that much of the money pouring in wasn't reaching the groups most at risk. In 1990, Mr. Amory took part in a telephone survey of about 50 HIV/AIDS groups funded by the CDC. Fewer than 10% even mentioned gay men as among their constituencies. (Mr. Amory died in November, after his interview with this newspaper.)

Meanwhile, the rush to testing meant that people at low risk were using up more and more of the available AIDS-prevention money just to discover they weren't infected. In 1994, 2.4 million tests were administered at government-funded locations, more than 10 times the number in 1985. Only 13% of those tests were given to homosexual or bisexual men or intravenous drug users.

As the CDC's biggest single prevention program, AIDS testing in 1995 accounted for about $136 million of the agency's total $589 million AIDS-prevention budget for that year. "It was not efficient or effective in picking up HIV-positive people," says Eric Goosby, director of the HIV/AIDS Policy Office of the U.S. Public Health Service, which oversees the CDC and other health agencies. Moreover, because treating drug-addiction wasn't directly part of the CDC's mandate, stopping the spread of AIDS among needle-sharing addicts fell "between the cracks," says Dr. James W. Curran, who was director of the anti-AIDS office at the CDC until late last year and is now dean of the School of Public Health at Emory University in Atlanta.

State funding for AIDS prevention --tracking public attitudes toward the disease --was also being directed largely toward low-risk groups, says Patricia E. Franks, a senior researcher at UCSF, who spearheaded a study of California AIDS spending between 1989 and 1992. The study found that while 85% of AIDS cases were concentrated among men who had sex with men, programs targeting this group received only 9% of all state AIDS prevention dollars.

Spending for women, in contrast, grew to 29% of the state money in 1992 from 13% in 1989, even though HIV rates among women of childbearing age held steady at less than one-tenth of 1% from 1988 through 1992.

California health officials say they believe spending on high-risk groups has improved in the past few years. But Wayne Sauseda, director of the California Office of AIDS, concedes that "it's hard to take money away from groups already receiving grants." In California's last three-year state funding cycle, "we were being deluged by proposals from low-and no-risk population groups," Mr. Sauseda says. "We got two proposals for every one from a high-risk group."

Typical of the requests from low-risk groups, he says, were proposals to offer education on college campuses. "No one would say coeds are not at any risk," says Mr. Sauseda. "But in California, that's not our first priority."

AIDS officials in other states report similar frustrations. In 1994, the CDC turned to a community-planning process for dispensing AIDS funds, a system that theoretically allows local people to allocate dollars to groups most in need. But various community planners say it has been tough to redirect the funds, in large part because public attitudes have become so entrenched.

In Oregon, for example, many community AIDS workers "are unwilling to acknowledge that youth who are truly at risk [are] young gay men," says Robert McAlister, the state's HIV program manager. Thus, most of Oregon's AIDS-prevention money is still spent on counseling and testing that primarily serves low-risk individuals. "When Magic Johnson made his statement, we got overwhelmed with clients demanding service," Dr. McAlister says. "You start to cut corners. If we try to serve everybody, we wind up serving everybody poorly."

Having helped shape current attitudes and set AIDS-prevention policies in motion, the Centers for Disease Control finds itself in a serious bind. So far, AIDS has killed 320,000 Americans, according to the CDC. Between 650,000 and 900,000 others are currently infected with the virus that causes the illness.

Overall, rates of new HIV infections appear to be declining from their peak in the mid-1980s. Nonetheless, as many as 40,000 people, mostly gay men, drug users and their sex partners, will contract the virus this year alone. Despite this, the CDC aims its current education campaign, called "Respect Yourself, Protect Yourself," at a broad spectrum of young adults, rather than targeting the high-risk groups. A current focus of the campaign is to discourage premarital sex among heterosexuals.

The CDC also has been emphasizing that women constitute a growing proportion of AIDS cases. But close analyses of the data indicate that the vast majority of these victims are drug users or sex partners of drug users. Also, the data partly reflect a statistical quirk: Because the number of infections among gay men has declined, other groups --such as women --now represent a larger percentage of victims. Yet the infection rate among women not in high-risk groups appears to be holding roughly steady.

Meanwhile, unpublished research by the CDC itself concludes that "the most effective efforts to reduce HIV infection will target injecting drug users on the Eastern seaboard, young and minority homosexual and bisexual men, and young and minority heterosexual women and men who smoke crack cocaine and have many sexual partners."

Numerous studies have shown significant behavior changes in gay men who have been counseled by gay-outreach programs. Susan M. Kegeles, a behavioral scientist at UCSF's Center for AIDS Prevention Studies, reports that an eight-month program in Eugene, Ore., reduced one of the highest-risk acts, unprotected anal intercourse, by 27% in young gay men. The program used leaders in the gay community to demonstrate and consistently reinforce safe-sex practices.

Other studies have shown that drug users need even more intense behavioral counseling to break their addiction. But "only 15% of active drug users are in treatment on any given day, and there are not enough treatment slots to meet the demand from drug users," according to a report by the federal Office of Technology Assessment. Further, the ban of federal funding for needle exchanges continues, even though most reports conclude that locally funded efforts to distribute sterile needles or needle-cleaning supplies have been effective in reducing the spread of infection.

An epidemiologist at UCSF, James G. Kahn, recently created an academic model which, he says, shows that over five years, $1 million spent in a high-risk population averts 150 infections, compared with two or three infections if the money is spent in a low-risk population. Moreover, he argues that reducing infections in high-risk groups would "almost certainly" benefit low-risk groups by reducing the pool of people who could potentially infect others.

Then there is the separate issue of honesty in government: Shouldn't the public hear the truth, even if there might be adverse consequences? "When the public starts mistrusting its public health officials, it takes a long time before they believe them again," says George Annas, a medical ethicist at Boston University.

Yet many both inside and outside the government fear that speaking more directly about AIDS transmission, and seeking federal programs to match, poses the same dangers it did nine years ago. Congress controls the purse strings, and Sen. Helms, in particular, still monitors every AIDS-related bill. Says a Helms staff member, "We would certainly have a problem" with money going to gay-activist groups or to produce materials that illustrate gay sex acts.

"There is a real concern that funding won't be shifted, it will be cut, that if most people in the U.S. feel they are at very low risk, there will be little support for any AIDS-prevention efforts," says Don Des Jarlais, director of research at the Chemical Dependency Institute of Beth Israel Medical Center in New York. Still, he and many others believe that prevention experts have no choice --and that it is time to fight for programs based on candor. "You can't build a good prevention program on bad epidemiology," he says. Even back in the 1980s, Stephen C. Joseph, who was commissioner of public health for New York City from 1986 to 1990, blasted the notion that AIDS was making major inroads into the general population.

Today Dr. Joseph, who is assistant secretary of defense for health affairs at the Pentagon, says: "Political correctness has prevented us from looking at the issue squarely in the eye and dealing with it. It is the responsibility of the public-health department to tell the truth."

A Question of Odds

Below are rough estimates of the relative risks in the U.S. and Western Europe of various activities that can transmit AIDS. The calculations can't be used as a guide to individual behavior. Risk to any one person depends on many factors that can't be reduced to a single number. Recent research, for example, suggests that the infectiousness of the HIV virus can vary greatly over the life of an infected person; infectiousness is likely to be high both at the very outset of the infection, before symptoms have appeared, and several years later. Also, women may be several times more likely than men to be infected through vaginal intercourse, a distinction that the overall risk figure obscures.

ACTIVITY: Vaginal sexual intercourse
RISK:1 infection per 1,000 acts with HIV-positive partner

NOTES AND SOURCES: Mean per-act risk for unprotected intercourse. Source: Isabelle de
Vincenzi, European Study Group on Heterosexual Transmission of HIV, 1994

ACTIVITY: Receptive anal intercourse
RISK: 5 to 30 infections per 1,000 acts with HIV-positive partner

NOTES AND SOURCES: With no condom use.
Source: Victor DeGruttola, Harvard School of Public Health, 1989

ACTIVITY: Intravenous drug injection
RISK: 10 to 20 infections per with infected needle 1,000 needle uses

NOTES AND SOURCES: Source: Don Des Jarlais, Beth Israel Medical Center, New York

ACTIVITY: Accidental stick in medical
RISK: 3 infections per 1,000 sticks setting with infected needle

NOTES AND SOURCES: Source: Centers for Disease Control

ACTIVITY: Transfusion of screened blood
RISK: 1 infection per 450,000 to 660,000 donations