Now, under pressure from the Nation of Islam and other groups, those same officials are gearing up for a major new study of low-dose interferon, and the activists are helping to design it. Critics are appalled that a drug with such modest prospects has suddenly become a research priority. But given the passions that now surround the treatment, this may be the only way to move forward.
Though championed as an African innovation, low-dose oral interferon is the brainchild of a white Texan named Joseph Cummins, who conceived it as a treatment for respiratory diseases in cattle. Interferons are natural chemicals that cells use in minute quantities to fend off various assaults. Doctors sometimes administer them at thousands of times their natural concentrations to fight viruses or stimulate the immune system. But Cummins has used low oral doses to treat both human and animal illnesses, and the results have been intriguing. In 1976, for example, his mother-in-law came down with malignant melanoma, and in 1978 he invited her to try eating bovine nasal secretions that had shown interferonlike activity in culture. It was likely a fluke, but after two months of swallowing cow mucus on a regular schedule, she went into remission and stayed there.
The saga now playing out at the National Institutes of Health (NIH) started in 1989, when Cummins visited Kenya to work on a cattle study and met Koech, director of the Nairobi-based Kenya Medical Research Institute. Koech was interested in trying the treatment on AIDS patients, so Cummins started sending him the drug in a new powdered form and Koech gave his patients small daily doses on wafers. Within months, Koech declared the treatment a success and gave it the trade name Kemron. In published reports (coauthored by Cummins), he claimed that 99 out of 101 treated patients became outwardly healthy on the treatment, that some regained huge numbers of lost immune cells and that some even stopped exhibiting HIV in their blood.
The findings were far from definitive; because Koech didn’t compare treated and untreated patients, it was hard to know how much of the improvement was due to the drug. But that didn’t dampen the enthusiasm of the Kenyan government or its U.S. admirers. At a Nairobi rally marking Kemron’s formal launch, President Daniel arap Moi announced that “Fifty AIDS victims have already been cured,” and Koech decried Western scientists’ skepticism. In New York, the Amsterdam the “racist white press” of “cabalistically [ignoring] this amazing discovery.”
Before long, oral interferon was circulating in underground AIDS “buyers’ clubs,” and the Nation of Islam’s urban AIDS clinics were offering it as standard treatment. Yet neither the World Health Organization nor the NIH could find any clear evidence that it worked. Last spring, after reviewing 13 completed or ongoing studies, including several by Koech, an NIH advisory committee counseled patients against taking it. But the review failed to address Kemron’s biggest selling point. Proponents argue that even if oral interferon does not reliably kill HIV or restore lost immune cells, it does help people feel better, by restoring their energy and appetite. “None of us has been saying it’s a cure,” says Dr. Barbara Justice, clinical director of the Nation of Islam’s Abundant Life Clinic in Harlem. “It’s a nontoxic treatment that we have found to be of benefit.”
When Justice and other clinicians, including her Washington, D.C., counterpart, Dr. Abdul Alim Muhammad, called for a study to test that claim, the NIH reconsidered its position. Like it or not, explains Dr. Jack Killen of the NIH, “hundreds, perhaps thousands, of people are using a treatment of unknown value.” In October, the agency agreed to sponsor a trial. A committee of activists and scientists is now meeting to work out the logistics. The plan is to offer patients standard treatments, such as AZT, along with daily doses of either interferon or a placebo. If the drug works as advertised, those receiving it should suffer less fatigue, nausea and weight loss than those on the placebo.
Outside the black community, few AIDS experts harbor high hopes. Martin Delaney, head of the San Francisco-based Project Inform, notes that any new treatment can make people feel better, if only by offering hope. But Cummins believes he’s on to something more substantial. Animal studies support the claim that interferon improves people’s energy and appetite, he says. Besides confirming that benefit, a well-designed study could help identify the drug’s optimal form and dosage.
What bothers critics is that of all the prospective therapies awaiting study, this one alone should get special consideration. “There are standards of scientific rigor that we should not lower in the name of being politically correct,” says Stephen Thomas, director of the University of Maryland’s Minority Health Research Laboratory. He denounces doctors like Justice and Muhammad for promoting an unproven therapy, and he criticizes the NIH for letting them dictate its priorities. “My concern,” he says, “is that millions of dollars will go into this that might go somewhere else more promising.” That’s a legitimate concern, but so is the black community’s profound alienation from the medical establishment. By ignoring the Kemron outcry, the government would only harden the suspicion that it is suppressing a treatment that works. In purely scientific terms, there may be more promising drugs to investigate. But where AIDS is concerned, science has to accommodate the world.
