We once trusted that we were safe from plagues and that biomedical science was largely above politics, but AIDS has repeatedly shaken our trust. Throughout its short but daunting history, the epidemic has challenged many Americans, including those who work in the nation's labs and newsrooms.

Before the headlines of 1981 announced the appearance of a set of rare cancers and incurable infections among gay men that eventually came to be known as acquired immune deficiency syndrome, or AIDS, most Americans viewed infectious diseases such as polio and tuberculosis as historical curiosities. We believed in the invincible power of an armament of vaccines, antibiotics, and antiviral drugs. The tragedy of thalidomide babies was our master paradigm for all consumer health battles, in which the sick and potentially sick were to be protected by the Food and drug Administration from unsafe treatments and shameless profiteering. Moreover, the American biomedical research establishment, particularly the National Institutes of Health, had our near-absolute trust. We accepted the scientists' view that their agenda was identical to that of the nation's; gathering and analyzing research data was their sole province. Good journalists are not supposed to operate on assumptions. Yet it would be naive to deny thajournalists, even the most probing, are limited by the assumptions of the societies they cover.

In Acceptable Risks, Jonathan Kwitny recounts how many of the assumptions of the pre-AIDS era, particularly those regarding the nature of medical research, have been crushed under the weight of the epidemic. Acceptable Risks chronicles the dramatic efforts of AIDS activists to both circumvent and revolutionize the drug approval process in the United States. While focusing largely on the search for effective drugs, Kwitny also explores how the media reported on and played a role in these massive changes. The portrayal that Kwitny -- former writer for The Wall Street Journal, broadcast journalist, and author of several investigative books -- offers of his former colleagues is often far from flattering. He lays bare the challenges that arise for journalists when the rules of science, society, and the control of information change. Unfortunately, Kwitny's account does not always live up to the standards by which he measures the work of others. Both in its successes and failures, Acceptable Risks shows some the problems still plaguing journalists and writers who cover AIDS research and drug development.

Acceptable Risks is a good read. This is no simple accomplishment, given the alphabet soup of drug names, multilayered federal bureaucracies, domestic and foreign drug companies, research physicians, journalists, politicians, ailing people, and underground figures who make repeated appearances throughout. To Kwitny's credit, he consistently examines the motivations of a shifting cast of characters in this drama. His navigation of this complex story is achieved by charting it from the vantage of two men, Martin Delaney and Jim Corti. Both activists have successfully fought to bring treatments for HIV to the infected and ailing. Neither Delaney nor Corti (both gay, both HIV-negative) was a political activist of any sort before the AIDS virus began to infect and stalk their neighbors, friends, and lovers.

In the early 1980s Martin Delaney was a successful business consultant. He had suffered severely from chronic hepatitis, a frequently fatal liver infection rampant in the gay community at that time. Delaney benefited from an experimental treatment which unfortunately left the nerve endings in his feet permanently damaged. Nonetheless, this lifesaving treatment shaped Delaney's positive views of experimental treatments. When his lover became ill with HIV, Delaney turned his considerable intelligence and will to procuring AIDS treatments. His role in the search for AIDS treatments grew rapidly, and in 1985 he founded and became executive director of Project Inform, a San Francisco-based foundation that provides information on treatments for AIDS to tens of thousands of people around the world. Recent reports suggested that Delaney has been forced to give up his executive duties by a disgruntled staff, but he continues to represent Project Inform as its founding director.

At about the same time that Delaney joined the hunt for AIDS treatments, Corti, a clinical nurse working in southern California, embarked on a similar search on behalf of friends who had begun to manifest the telltale symptoms of HIV infection. Both men soon became involved in the smuggling of possible AIDS treatments across the border from Mexico, making each other's acquaintance through the emerging AIDS-treatment underground. They developed a highly cooperative working relationship, in short order establishing a rough division of labor. Corti concentrated on seeking out possible treatments and procuring them through contacts in Mexico and Canada and in many European and Asian nations. He utilized his growing network of contacts so adroitly that at moments one forgets while reading Acceptable Risks that he was doing anything unusual. Focusing his efforts on reforming the drug approval process in the U.S., Delaney has played a pivotal role in persuading the FDA and the biomedical research establishmento rewrite the rules for approving and granting access to treatments for life-threatening illnesses.

Delaney and Corti are clearly Kwitny's heroes; indeed, they are two of the most important figures among the new breed of activist-experts. Kwitny's comments on drug regulations in his Afterword explain his unstinting admiration for both men. However, the author reaches beyond the position staked out by his subjects and offers his own libertarian view of drug approval. He argues that the FDA should simply gather and provide consumers with reliable information about the safety and efficacy of treatments. As an advocate of consumer empowerment, Kwitny believes that patients and doctors should discuss the risks in pursuing a course of treatment that each regards as acceptable.

While one cannot fail to appreciate Kwitny's sympathy for the sick, his judgment has to be questioned. Buried -- in the author's Afterword -- is the significant fact that Delaney and Corti will share 40 percent of the earnings from the book. Kwitny writes that the two men are,in effect, his partners as well as his subjects. With all his dedication to informing consumers, one would expect him to have included this information in the introductory Author's Note.

While recounting the exceptional efforts of two extraordinary men, Acceptable Risks sometimes has the distinct feel of hagiography. More historical and factual information about the FDA and the work of other activists would help readers better assess the contributions of Corti and Delaney, whose ideas are offered at length, while the views of others are shunted off to notes at the back of the book. Most frustrating is the lack of an index, leaving serious readers who want to retrace particular events within this sprawling story to do so on their own. (Readers of Acceptable Risks should consider turning to Against the Odds: The Story of AIDS Drug Development, Politics, and Profits, by Peter S. Arno and Karyn Feiden, for the broad strokes missing in Kwitny's work.)

As for the media, Kwitny offers some keen observations about how Delaney, one of the most astute AIDS activists, assesses members of the press. Often Delaney characterizes journalists as bunglers and obstacles and, less frequently, as allies and friends. Some are seen as pliable, while others are viewed as dangerous, even destructive. Still other journalists are branded as uncritical supporters of traditional approaches to drug development and research. Nonetheless, the author and his subjects consistently view journalists as key players in the drug approval process, and repeatedly try to assess the impact of news coverage on their activities. In some respects, Acceptable Risks serves as a kind of primer of the relationship between journalists and activists.

Of all the journalists written about in Acceptable Risks, the hardest hit is Gina Kolata of The New York Times. Kolata is consistently viewed by Delaney and Kwitny as a reporter who can't get a story straight. Delaney has nothing but disdain for her, but fears her critical page-one power. Kolata's list of sins, as seen by Delaney, is too long to enumerate here. However, he is absolutely convinced that she is profoundly biased in favor of traditional research and drug approval. He thinks this is particularly true of her coverage of the Compound Q story.

Derived from a Chinese cucumber root, this compound was thought to be a possible treatment for AIDS, even by establishment researchers. However, fearing that official studies of Q would take too long, Delaney and Corti followed their usual division of labor: Corti traveled to China and obtained a supply of Compound Q; Delaney established the research protocol in the U.S. While they most certainly hoped that Q would be the long-sought-after treatment for HIV, Delaney and Corti also wanted to prove that they could test Q more quickly than the official researchers running their own trials at San Francisco General Hospital.

A whirlwind of media attention descended on Delaney after two subjects died in the underground trials of Compound Q -- the first in San Francisco, the second in New York. According to Delaney, there was no proof whatsoever that Q had killed them, and he reminded journalists that many people in AIDS studies die for reasons unrelated to treatment. Kolata, however, linked the deaths directly to Q. Delaney believes that Kolata applied a double standard by asking questions of him that she had never asked of traditional researchers regarding official research studies of such drugs as AZT. In essence, Delaney makes the brief that Kolata seeks opportunities to discredit nontraditional researchers and displays too great a loyalty to officially sanctioned work. Although some of his complaints seem to be justified, Delaney comes off as naive. Fair or not, an unofficial trial is likely to draw more critical attention.

On the opposite end of the journalistic spectrum from Kolata were reporters who saw it Delaney's way. Like an astute politician, Delaney made every effort to put the best spin on any story related to his work. Kwitny recounts how, during the Q controversy, Delaney called a friend at The Associated Press to complain about how a very specific aspect of the story was being covered by most papers. Kwitny writes that Delaney was "surprised and pleased when she arranged for a toned-down story to go out on the wire, more accurately reflecting the situation."

Delaney's view of the work of John Crewdson of the Chicago Tribune is telling about the activist's single-minded view of every issue. Crewdson has aggressively pursued the controversy over the role of Dr. Robert Gallo, of the National Cancer Institute, in discovering HIV. Delaney's response to Crewdson's stories of Gallo's alleged breach of ethics seems to have been myopic: Delaney's sole concern was that Crewdson's stories might serve as an impediment to research by Gallo and to an impending deal between Gallo's lab and a Japanese pharmaceutical firm.

In one very entertaining episode, Kwitny shows how Delaney and a government official agreed to a mutually beneficial agenda for a discussion on a 1987 Nightline show about the FDA's role in approving AIDS treatments. As Kwitny recounts it, Delaney found himself in the ABC make-up room in Washington with his intended sparring partner, Dr. Frank Young, commissioner of the FDA under President Reagan. After a brief and heated exchange before air time, Delaney and Young agreed to what they would and would not debate in public. For different reasons, both men did not want to discuss the interpretation of data relating to ribavirin, a controversial AIDS treatment that Delaney and others had been investigating. So much for the piercing questions of journalists.

Acceptable Risks traces the activities of Delaney and Corti through the spring of 1992, but the story of AIDS coverage doesn't stop there. In fact, it continues to unfold in unpredictable ways. the battle to democratize data, joined by Delaney and Corti, has created a new atmosphere for AIDS research and for its reporting.

Before AIDS, there was little or no coverage of raw, unreviewed data gathered in laboratory or clinical settings. The research establishment, which universally relied on lengthy peer review by The New England Journal of Medicine and other authoritative publications and institutions, set with pace and the tone for journalism. Delaney's Project Inform and numerous organizations -- including the treatment and data committees of the AIDS Coalition to Unleash Power, or ACT UP -- have had an incalculable impact on the nature of speed of research. These forces have demanded that established researchers ask different questions, gather data differently, and review it earlier and more flexibly. As the research process has become democratized, activists have forced scientists to include more people than ever before in research protocols --more women, African-Americans, children, drug users, and others affected by HIV.

The greatest shift of power occurred when activists, Delaney and Corti among them, took on the task of gathering their own data, conducting their own analyses, and critiquing and contributing to the conclusions of establishments scientists. Officials of the NIH, the FDA, and other federal agencies have acknowledged this reconfiguration of the "data loop" by appointing activist-experts to panels that review grants and research, and the AIDS establishment has been forced to make room for activists to present papers at annual international conferences on AIDS.

This renegotiation of the control over data and their meaning presents opportunities as well as risks for everyone involved, including journalists. In fact, the rewriting of these rules yielded some unusual results this past summer at the Eighth International Conference on AIDS in Amsterdam, demonstrating how very tricky it can be to report on unreviewed data.

In an apparent surge of pack journalism, reporters and producers at the conference focused almost exclusively on reports of a new AIDS virus or AIDS-like illness apparently not caused by HIV. This episode began on the opening day of the conference, with a July 27 Newsweek report that suggested the possibility of a new syndrome and a new agent. Newsweek based its story on the work of several scientists, including Dr. Jeffrey Laurence, a veteran AIDS researcher at New York Hospital-Cornell Medical Center, who, many believe, fed the story directly to the magazine -- an assertion which Newsweek's publicity operation made the story available to American news organizations. In response, other research scientists felt compelled to announce similar unreviewed findings. When these stories broke over the wires in the conference newsroom, reporters began demanding more information. As a result, two dramatic news conferences on the possible "mystery virus" were held. These news conferences received extensive covere, even as many of the top researchers at the conference downplayed the likelihood of identifying a new virus among these cases. Although press reports responsibly noted how very tenuous these preliminary findings were, report after report focused on the threat a new undetectable virus might pose to the general population. Many other news stories related to HIV were eclipsed.

After several months of intensive study, the World Health Organization and the U.S. Centers for Disease Control dismissed these initial reports of a new syndrome. Researchers concluded there was no evidence to suggest that these cases were related or that a single agent could be identified.

Since the conference, AIDS researchers, conference staffers, and others who work for major AIDS research and public health organizations have expressed disappointment; they complain that the non-HIV AIDS story overshadowed almost all stories on HIV. Some have joked that the only virus discovered at the conference was called MTV, for "media transforming virus."

Joking aside, it is fair to ask how the press ended up chasing a story of virtually no consequence, while overlooking many papers of relevance to the millions of people infected with HIV. At the same time, it is impossible to see how the press could have not followed up the reports by Dr. Laurence and others. Making the call to pursue this story aggressively must be viewed in the context of journalists having been criticized for under-reporting significant AIDS stories in the early 1980s. The press didn't want to make the same mistake again. Finally, journalists have to some extent followed the lead of AIDS activists in their demands for the release of important data as early as possible. On the AIDS beat, the current rule is: if a new development is in the works, report it as quickly as possible.

Coverage of the Amsterdam conference brings into focus the very profound differences between science and journalism. News generally demands dramatic and easy-to-understand stories written in bold strokes. Conversely, research science usually builds incrementally on earlier findings. Since not every AIDS conference can guarantee a dramatic new finding, the appeal of a "sexy" story like a non-HIV AIDS is that much stronger.

One certain result of this summer's heavy press coverage of the non-HIV AIDS story is that it compelled American and international research authorities to review the data immediately. In fact, the CDC acknowledged that it had erred. At the conference in Amsterdam, Dr. James Curran, director of the office of HIV-AIDS, said the federal agency had known of such reports for some time and had not investigated them promptly. If a new immunosuppressive agent had indeed been identified, there would have been little handwringing over the way the story dominated the rest of the conference. Thus, the events of this summer on the AIDS beat make clear the double bind of reporting on data early in the research process.

Clearly, data subjected to peer review should never have been above question, just as data released directly to the press do not always lead to the truth. The constant questioning of every possible scientific, political, journalistic, and sentimental assumption is the only antidote to the inherent messiness of this story. As the press moves on through the second decade of AIDS coverage, it must bring all its critical skills to bear on this story. A new mythology should not replace the old one.

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