AIDS Researchers, Activists Wary Of Newspaper Article's Message

Despite contrary suggestions, they say CDC's prevention efforts aimed toward general public were not wasted A recent article in the Wall Street Journal is causing concern in the AIDS research community. The article, titled "AIDS Fight Is Skewed By Federal Campaign Exaggerating Risks" (A. Bennett, A. Sharpe, May 1, 1996, page 1), contends that the federal Centers for Disease Control and Prevention (CDC) in Atlanta has distorted the public's perception of the potential for contracting AIDS with a highly alarming and misleading message: Anyone can get it. The article acknowledges that the message-launched in 1987 in CDC's "America Responds to AIDS" program-was technically correct. Yet the authors argue that the campaign ignores the proven prevalence of the disease in certain populations, most notably in gay men and intravenous drug abusers. CRITIC: CDC's Helene Gayle claims no one could predict how AIDS would affect public health. Most scientists and activists, while conceding that parts of the article are accurate, dispute its claims that CDC either exaggerated risks or skewed prevention efforts to attract federal funds. At the same time, they say a combination of prevention education and awareness efforts aimed both at those who may be at particularly high risk for contracting AIDS and at a general audience is needed. Ronald O. Valdiserri, deputy director of CDC's National Center for HIV, STD, and TB Prevention in Atlanta, calls the article "less than accurate in several areas." He says it "embodied a simplistic view of HIV prevention. Some think it is a single intervention or message. The reality is that it embodies several. "While it's true that HIV prevention needs to be targeted to certain populations, it's also true that a component of a comprehensive program entails information for the general public," Valdiserri points out. "One problem with the article is that it implied an either/or situation. The article conveys the misperception that there was little targeting. The fact is, the vast majority of our prevention resources go to those who are at high risk." Within the first few years after AIDS was identified in the United States, scientists knew it was confined mostly to homosexuals, drug abusers, and their sexual partners, the article argues. Yet Congress refused to provide funding for federal research for a disease that affected only such specific populations. The article suggests that by flooding the public with the message that anyone is at risk of acquiring AIDS, Congress would view it as a major public-health threat and cough up funds. At the same time, the article contends that CDC may have cost lives by directing prevention efforts away from those at greatest risk of contracting AIDS. "Some scientists charge that tens of thousands of infections a year could be averted if only practical assistance were directed to the right people," the article says. NO FEAR: Don Des Jariais wants to focus prevention efforts on high-risk behaviors and "reduce the stigmatizing fear" of contracting AIDS. Many scientists suggest that CDC had little choice but to aim prevention efforts at the entire population because information on the transmission and epidemiology of AIDS was uncertain when it was first identified. "The article didn't reflect the scientific uncertainty at the time [about] where the virus would go [in the population]," says Don Des Jarlais, director of research at the Chemical Dependency Institute at Beth Israel Medical Center in New York, who contends that the article is otherwise "90 percent accurate." Today, he notes, "the science has become clearer [about] where to focus prevention efforts, but it's been hard to change the politics." It's time, he argues, to focus prevention programs on high-risk behaviors. CDC's concern in 1987, says Des Jarlais, wasn't "if we scare people, we can get money." Rather, he contends, the agency decided, "We have to educate the public on how AIDS is and isn't transmitted. We have to reduce the stigmatizing fear [of the disease]." June E. Osborn, a professor of epidemiology, pediatrics, and communicable diseases at the University of Michigan, strongly disagrees with the article's assertion that CDC's widespread prevention efforts and awareness campaigns wasted money on those who were unlikely to become infected. "I wouldn't say there was an overemphasis on AIDS prevention among heterosexuals," she states. "I think it's an important prevention message to get out. BULL'S-EYE: Michigan State's Robert Root-Bernstein agrees with the article, contending that scientist knew "there wouldn't be a heterosexual epidemic." "There's been a steady emphasis on high-risk groups, and it's been increasingly difficult to get the message across in the last 10 years that everyone may be at risk," she says. Yet others, such as Robert Root-Bernstein, a professor of physiology at Michigan State University, think the article was on the mark. "A lot of people who read the article are saying, 'Finally, someone is looking at this objectively,'" notes Root-Bernstein, who does not believe that AIDS is caused by HIV alone. "The evidence has been there for eight years that there wouldn't be a heterosexual epidemic." He and others point out that the recent rise in cases among heterosexual women is relatively small and mostly confined to those whose behaviors-abusing intravenous drugs, sharing needles, and exchanging sex for drugs, for example-put them at risk. According to a recent CDC report, intravenous drug users are continuing to develop AIDS and spreading it to their heterosexual partners, accounting for most of the cases among women and heterosexual men. Some 85 percent of the 17,686 AIDS cases reported last year among heterosexual men and 66 percent of the 10,777 cases among women were tied to intravenous drug use. CDC currently defines AIDS as the presence of HIV, a CD4+ T-lymphocyte cell count, which is used to gauge immune system strength, below 200 cells per cubic millimeter of blood, and the presence of one or more of some 20-plus illnesses and opportunistic infections, ranging from infectious diseases and malignancies to dementia and wasting. James W. Curran used to be associate director for HIV/AIDS programs at CDC. Today, less than a year after leaving the government and assuming the deanship of the School of Public Health at Emory University in Atlanta, he reacts disgustedly to the article's implications. "The tone of the article is that the heterosexual problem has been overemphasized," he comments. "It sounds as if we should have ignored everyone other than those in the higher-risk categories. We should've told kids, 'It's okay to have sex, just not with anyone who used drugs [or] is homosexual.' . . . Only a few percent of cases of HIV infection last year were by heterosexual transmission, so don't worry.'" NO WAY OUT: University of Washington's King Holmes notes that AIDS prevention has "been hampered by political concerns." Epidemiologist King K. Holmes, a professor of medicine and director of the Center for AIDS and Sexually Transmitted Diseases at the University of Washington in Seattle, notes that funding has been inadequate for AIDS-prevention efforts in general. "Our approaches have been hampered by political concerns," he maintains. "Despite over 70 needle exchange programs [in American cities], we have no government funding-it's a political holdup in Congress. The government frowns on publicly promoting condom use, as well." TAG's Mark Harrington: "We know that targeted prevention isn't enough. The question is, how do you change behavior?" Holmes contends that CDC's prevention strategy needs to be examined, given the epidemiology of AIDS in the heterosexual population. The overall resources for HIV prevention are "severely limited by conservative political concerns," he says. Such limited resources have in turn affected the government's prevention efforts. The article does not reflect how conservative politics influence funding, Des Jarlais points out. "Historically, the government has a difficult time talking about safe sex. The federal government doesn't support needle exchange. Some of the more effective components of a prevention campaign were blocked. Dollars flowed in certain directions in part because effective prevention programs for people at risk were blocked politically. "The science has become clearer [regarding] where to put the resources and focus prevention efforts, but it's very hard to change the politics of it." However, he concedes that it's difficult to change funding streams and grant allocations. Des Jarlais points out that the issue of targeting vs. universal prevention efforts is hardly new. It's been an ongoing debate. However, he doesn't, as the article contends, see universal prevention efforts as "wasting money." But he agrees that CDC's $584 million AIDS-prevention budget needs to be reallocated to target specific groups. "It's not really reaching people who might be infected," he notes. Mike Shriver, director of public policy and media coordinator for the National Association of People with AIDS, an advocacy organization in Washington, D.C., sees the article as adding fuel to the argument: Why bother funding AIDS prevention if the money is being misused now and the disease remains primarily confined to small segments of the population-homosexuals and intravenous drug abusers? "The Wall Street Journal seems to be saying that CDC has done a substandard prevention job because it hasn't stopped AIDS. No other disease-prevention effort has been held to that standard," Shriver says. Yet, he notes, "targeted prevention efforts have already made a difference. We have cities' statistics showing that efforts have resulted in changing people's behaviors." TRY HARDER: UCSF's Nancy Padian thinks that CDC can improve its prevention targeting efforts, but she wonders if politics will permit it. Nancy Padian, an infectious-disease specialist at the University of California, San Francisco, notes that "activists lobbied heavily for universal prevention to get money to support [targeted] prevention for women." She notes that, according to CDC, in some areas in the U.S. the fastest-growing group of HIV-infected individuals is heterosexual women, particularly those who are involved in drug use. "It [prevention] still merits targeted focus; the CDC could do better," Padian believes. She also agrees with Des Jarlais's assertion that funds should be reallocated. "It's not fair to finger CDC. They may not entirely dictate where the money goes. If the government doesn't want to deal with sex and drugs, what can you do? How do you get around those obstacles? CDC may have been incapable of doing that. "Whether the political environment in this country will allow it is another question." Yet Michigan's Osborn urges universal prevention for a couple of reasons. She maintains that certain populations are hard to reach. "In some parts of society, there's an increased risk of heterosexual transmission, and worldwide it's 75 percent. The fact that it wasn't initially true here may be an accident-there's not different biology." In addition, she notes, "most people don't identify themselves with high-risk groups or behaviors. [Some] men who have sex with men don't think of themselves as homosexuals. Those who take occasional intravenous drugs don't see themselves as addicts. Those who have multiple partners don't think they are promiscuous. "It's a massive epidemic, and there's still an effort to minimize it, and that's dangerous," she maintains. "Getting the message out needs more effort, not less." At the same time, however, she argues for "putting special efforts in prevention among those whose behaviors put them at high risk." AIDS activists see the need for targeted education and prevention programs, in addition to general awareness. "There needs to be more money to targeted initiatives to groups and to prevention research," says Mark Harrington, policy director for Treatment Action Group (TAG), an AIDS activist group in New York. "We know that targeted prevention isn't enough. There has to be prevention research. Young gay men are saturated with information. They know about condoms. The question is, how do you change behavior?" Harrington contends that little was done to educate the public about AIDS at the start of the epidemic. "There was little media coverage. Remember, there were no treatments; prevention was all we had. The most effective prevention couldn't be done with government funds thanks to Sen. Jesse Helms's (R-N.C.) measures [to block funding proposals]. "Now the issue isn't [getting] the message to the general public," he argues. Rather, it is how to reach certain populations with effective prevention programs, in addition to the public. Kiyoshi Kuromiya, project director for Critical Path AIDS Project Inc., an education and activist organization in Philadelphia, agrees that both targeted and broad-based prevention are needed. "One of the groups we're targeting are heterosexual men who live in the suburbs, some of whom have families, and [previously] in the evening would frequent bath houses and practice high-risk sex with multiple partners. Yet, we'll see increasing numbers of women with AIDS, partners of drug abusers, heterosexual men, groups who didn't think they were at risk but are-particularly promiscuous teenagers." CDC has its own opinion of its prevention and education efforts during the past nine years. Both CDC and former U.S. Surgeon General C. Everett Koop shot off letters to the Wall Street Journal editorial page editor in response to the May 1 article. The CDC letter, which was signed by both director David Satcher and Helene Gayle, director of the National Center for HIV, STD, and TB Prevention, called the article's claim "false" and "presented without consideration of the public health stakes involved." The letter says that it was impossible to predict how AIDS would affect public health in 1987. Koop's letter called the article "seriously flawed." He echoed the CDC letter regarding a lack of certainty as to the course of the AIDS epidemic, and pointed to the worldwide epidemic among heterosexuals as a basis for "the decision to deliver messages about HIV and AIDS to the broad public. . . ." He also disputed the role of politics in influencing funding. He noted that "we must also deliver tailored messages for the groups at highest risk for infection. In 1987, every message . . . about HIV/AIDS was developed and delivered in defiance of the Reagan administration's Domestic Policy Council." At the time, all AIDS material had to be cleared by the council. CDC's Valdiserri notes that the Wall Street Journal article neglected to fully explain recent AIDS-prevention and targeting efforts at the centers. For example, in 1994, CDC enlisted the recommendations of community organizations and public health departments to help radically overhaul how AIDS-prevention programs were be- ing planned and priorities were chosen. "Decisions about which programs to fund and which groups to be given priority for prevention were made based on the epidemiology of the epidemic." NEVER A DOUBT: Former CDC official James Curran supports universal prevention efforts, though he notes that some funds may need to be reallocated. Former CDC official James Curran questions the article's timing, calling it "suspicious." He notes that there is "no coincidence it came out at the same time of the [House] appropriation committee hearings [for the National Institutes of Health in fiscal 1997]. It doesn't sound like reporting news, but that they are orchestrating something. "It appears to provide more ammunition for government budget cutters. They can say [the article's message is that] prevention efforts are misplaced and they are wasting money, and besides, there's no real risk to most of the population," he says. Though Curran acknowledges that CDC may have to rethink and reallocate funding for prevention efforts, he contends that the message needs to remain the same. Some AIDS epidemiologists argue that it is time for new prevention programs. FUTURE-LOOKING: UCSF's Margaret Chesney sees a "need to bridge the science and the prevention and behavioral aspects of AIDS UC-San Francisco epidemiologist Margaret Chesney contends that rather than look back, "we should focus on the future" in U.S. AIDS-prevention efforts. Chesney, a professor of medicine and codirector of the UC-San Francisco Center for AIDS Prevention Studies, commends CDC for its "detective efforts" in solving the epidemiology of the disease. A member of two panels in a recent Office of AIDS Research (OAR) review (S. Benowitz, The Scientist, May 13, 1996, page 3), Chesney calls for "unparalleled prevention studies" and "an integrative plan to develop comprehensive prevention efforts involving government agencies, including the National Institute of Mental Health (NIMH), the National Institute on Drug Abuse, the National Institute of Allergy and Infectious Diseases, and the National Institute of Child Health and Human Development, along with the CDC." That message was spelled out in OAR's Working Group report, which was an executive summary of a comprehensive review of AIDS research programs across NIH. Chesney believes that the time is ripe for a "new beginning," particularly in view of the recent OAR report, which called for more prevention coordination. The article quotes CDC's Gayle as saying that "by giving communities more freedom to decide how to spend federal AIDS money, [the agency] is now seeking to direct more help to those who need it most." At the same time, other efforts have been under way. At NIMH, some 50 percent of the institute's $93.5 million AIDS-research budget goes to prevention efforts. "Our focus is on the design of effective behavioral interventions for those at risk," says Ellen Stover, director of the NIMH Office on AIDS. She explains there are NIMH-funded prevention research centers at Columbia University, at UC-San Francisco, and at the Medical College of Wisconsin, Milwaukee. Researchers at these centers frequently work hand-in-hand with CDC officials, Stover says. "All people who are the focus of NIMH-funded research programs live in areas where there's a high prevalence of HIV infection, or among groups-the homeless and ethnic minority groups, for example. We have programs aimed at both preventing infection from high-risk behaviors and at preventing transmission after infection. "We try to translate the findings from our research-we figure out what programs work, then help infuse those models into a CDC community planning process," says Stover. "That mechanism helps determine how resources will be allocated." "We've learned a lot about the epidemiology of HIV and AIDS, about targeting in prevention, and where the disease is going. A lot of excellent science has been done," observes Chesney. She sees a "need to bridge the science and the prevention and behavioral aspects of the disease. "We may have missed opportunities previously," she notes, "but with the OAR review, we are at a turning point in the epidemic, and we have new opportunities for prevention."

AIDS Researchers, Activists Wary Of Newspaper Article's Message

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