In his new book, "Acceptable Risks," Jonathan Kwitny chronicles the story of two men, Martin Delaney and Jim Corti, who sacrificed their careers to help find life-extending drugs for AIDS patients. In the process, they waged a citizens' revolt against the establishment medical community, large drug companies and the Food and Drug Administration. Kwitny set out to tell a saga of two unlikely heroes, but in the course of doing research for the book came across numerous examples of inaccurate reporting that harmed their reputations and often undermined their efforts.
When Martin Delaney and Jim Corti began smuggling drugs across the U.S.-Mexican border in the mid-1980s, their efforts were considered by many to be a labor of love. They weren't bringing in heroin or cocaine. Instead, they were smuggling promising anti-AIDS drugs, sold over the counter in Mexico but not available in the United States. Neither Delaney nor Corti, who are both gay, was infected by the AIDS virus. Yet they were surrounded by sick friends hoping for anything that might extend their lives-medicines they weren't getting from their doctors or the government, which approves AIDS drugs.
It was the beginning of a decade-long crusade that would challenge and change the medical establishment's and Food and Drug Administration's way of doing business. The two men's efforts quickly expanded beyond buying and selling drugs. They organized doctors and patients in an underground network to test the safety and efficacy of potentially useful drugs years before FDA-supervised research would have. Standard drug approval procedures typically consume a decade and hundreds of millions of dollars.
Delaney, Corti and others involved with the tests proved that research could be done much faster and cheaper than in the official process, and that many drugs could be offered safely to patients much earlier. They also built a case for a testing system that, while less precise than the FDA:S, was still scientifically adequate for many purposes. Many more lives would be saved by speedier access to drugs, they argued, than would be lost by overly hasty access, especially in cases involving deadly diseases such as AIDS. Delaney has since been applauded for his efforts by those benefiting from the drugs and leading government scientists, including some at the FDA. Corti continues to work underground investigating new drugs manufactured in other countries.
But in the early days, Delaney, a successful bank consultant living near San Francisco, and Corti, an artist working as a nurse in Los Angeles, were treated as outlaws by the federal government. They were vilified by research doctors who, though dedicated to scientific service, had grown accustomed to and made their livings from the drug testing system that Delaney and Corti were threatening.
Unfortunately, their efforts were also undermined by the press. Print and broadcast reporters were all too eager to accept the views of the FDA and research doctors with a financial stake in drug testing. These scientists, who often work at university teaching hospitals, rely on research grants provided by drug companies and federal agencies such as the National Institutes of Health.
While the media had every reason to be skeptical of Delaney's and Corti's methods, they also had reason to be skeptical of the FDA. By accepting without question statements made by the FDA and establishment scientists, the media, inadvertently or not, became a mouthpiece for the FDA and the drug industry. Inaccurate coverage damaged the reputations of Delaney, Corti and their supporters in the medical profession. Worse, it contributed to delays in testing and approval that ultimately caused more suffering for the patients Delaney and Corti were trying to help.
"What [Delaney] was trying to do was establish a principle that things needed to be studied quickly and scientifically, [while providing] access on a wide scale to people in need," says Samuel Broder, director of the National Cancer Institute. "What people did was focus on the negative parts of that without providing balance. It's very difficult to tell two sides of a story if you only have one shot at a piece and you have a deadline ... and your editor may decide you've already done a story on that and you can't go back to it.... It [inaccurate coverage] may be difficult to offset."
Ribavirin, an anti-viral drug, and isoprinosine, an immune system booster, were developed in California but were …