In the communications field, there will likely be no greater test of the power of public affairs during this century than the AIDS crisis. For the public health institutions trying to keep a pulse on medical updates and research advances concerning AIDS and HIV, it is this very tailored kind of PR that has given them a channel to reach the media - their primary route to reaching the public.
And when one considers the less-than-temperate mass of messages these frontline spokespeople, at organizations such as the Centers for Disease Control, have been charged with both controlling and rebuffing, it's clearly far from easy.
"We have dealt with everything from questions about Rock Hudson going to Paris for treatment to the hype that follows news of any new drug," said Patricia Randall, director of the office of communications for the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health, Bethesda, Md. "This is a very difficult issue to deal with because people are desperately seeking something that will help."
For Randall, her job has been to make sure that the four NIAID press officers fielding calls always focus on the facts - and not the hope or the hype - while also trying to gauge how much accurate (and inaccurate) information about AIDS is in the marketplace. To illustrate that, an online search by PR NEWS on HIV and AIDS treatments and research turned up bona fide medical studies as well as homeopathic remedies unsanctioned by the traditional medical world.
And for NIH, that means making sure that when legitimate scientific findings are released, that the information can be interpreted, explained and relayed to the media. For instance, Randall said one of the largest spikes of press queries it has handled was when news about HIV protease inhibitors (which reduce HIV to undetectable levels in many patients) was publicly reported by scientists at a January 1996 meeting hosted by the Infectious Diseases Society. That news set off a wave of calls about whether a cure was on the horizon.
"Even though these were promising findings, the staff made it a point in every press encounter that this information was preliminary," Randall recalled. "And then in July, during an international AIDS meeting in Vancouver, a second crescendo hit. Part of what we end up doing is educating the public during these ups and downs - during these times when everyone from Newsweek to Time is reporting the near end of AIDS - and making sure that we counter that idea with the facts. We have to keep reminding people, 'It's not over - the AIDS epidemic is not over.' "
To achieve that, Randall's office issues at least one press release a week; sets up press interviews with experts; answers dozens of media calls that are in response to research findings and treatments; creates B-roll videos for educational purposes; and sets up briefings so journalists can question experts - doctors, scientists and researchers.
Giving the media easy access to experts who can define and clarify AIDS issues and dispel myths has been the cornerstone of NIH's public affairs program in the past 12 years, Randall said.
Between NIH's partnerships and its in-house specialists, a team of several hundred are called upon to answer reporters' questions and make sense of the jumble of news about AIDS that surfaces on a daily basis. Often, NIH communicators' jobs amount to squelching a feeding frenzy of media stories. Recall, if you will, that ever since news of AIDS hit the mainstream public in the early 1980s, public health officials have had to battle reams of rumors - including that HIV came from monkeys in Africa and that it was spread by mosquitoes.
Managing the AIDS crisis, from a communications vantage point, has been based on using specialists to transform technical information into verbiage the average American can understand. "Our scientists have become our key spokespeople," Randall said.
Johns Hopkins Debunk Myths
Two weeks ago - when press accounts about the Food and Drug Administration's recent approval of the AIDS drug delavirdine were beginning to surface in the mainstream media - Marc Kusinitz, assistant director of science communications at Johns Hopkins Medical Institutions, Baltimore, was charged with disseminating some less-than-promising news about AIDS.
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The Johns Hopkins release revealed that some immune system cells in HIV-positive persons carry the genetic information for making HIV -- meaning that "even if there is no detectable AIDS virus free in the blood or lymph nodes, the infection can flare again," according to doctors Robert Siliciano and Tae-Wook Chun.
But Kusinitz's job isn't always that straightforward and much of what he does amounts to putting out miniature PR fires or avoiding crises. For example, Johns Hopkins was contacted earlier this year by Baltimore's Channel 13 TV station about someone claiming that he had found a cure for AIDS.
And the cure was aloe vera.
"We got in touch with Dr. Joel Gallant (an assistant professor of medicine in the Division of Infectious Diseases, Department of Medicine, at the Johns Hopkins University School of Medicine) and we brought in the TV crew and the reporter and with the cameras rolling, we went online to verify the study. The author wasn't listed and as far as we could tell, it wasn't a controlled study. Still, the station ended up doing a two-part series" - proving that the pool of information available about AIDS and HIV is immense.
Unfortunately, because of the abundance of information about AIDS, Kusinitz said much of what Johns Hopkins ends up doing is trying to informally track what news about AIDS is in the public arena and anticipating what kinds of calls might follow.
"But generally the only time I know about something's that not factual is if it's so egregious that we hear about it." An example of that came when Kusinitz heard a nationally known comedian on a radio station knock the benefits of using a condom. Kusinitiz ended up calling the station and instead of demanding a correction, offered to put a doctor on air who could discuss the health risks of not using a condom.
Refuting rumors isn't an easy job, according to an unnamed reference supervisor who works for the 1-800-TRIALSA and 1-800-HIV-0440 information services, which are open from 9 a.m.-7 p.m. Eastern Standard Time. Staffers field thousands of calls each year from HIV-positive people as well as AIDS patients. For instance, staffers are still receiving calls from people who read or heard about Magic Johnson's wife, Cookie, referring to her husband's God-sent recovery in an article which appeared in Ebony magazine earlier this year. (NIH, 301/496-5717; Johns Hopkins, 410/955-8665)