Mad All Over

While Halloran is pushing for better information on CWD and BSE, Armstrong and other activists argue that CJD should be universally reportable. There has been a cluster of CJD cases in Salt Lake City. Mel Steiger, whose wife died of CJD, is spearheading the effort in Utah--with the support of morticians, who are at risk of infection when preparing bodies. "Most of the mortuary equipment cannot be sterilized," says Steiger, "so anyone who works on it and receives a puncture wound is at risk of becoming infected."

The Colorado Department of Public Health and Environment, which is working with the Centers for Disease Control on CJD, reviews the question of which diseases should be reported annually, says Dr. Hoffman. "I don't mind considering the addition of this," he adds. "It makes the statement that the board of health thinks it's a public health concern. I can see some value in sending out the message."

In August, Dr. John Collinge, professor of neurogenetics at London's Imperial College and one of the topic's foremost experts, delivered a far more pointed message to the London Times: "There seems to be a revisionist view gaining ground in the press not only that the link between bovine spongiform encephalopathy, or 'mad cow disease,' and new-variant CJD is not clearly established, but that the epidemic is likely to be small. In fact, the link is very clearly established and there are going to be a lot more cases. We are still in the dark about how many, but we have to prepare for the worst."

"We don't have a problem of that magnitude," says Halloran, "and we can prevent having one. But we don't seem to be doing it. We're taking half-measures and taking them late."

"What upsets us the most is when we've gone to the medical establishment for answers, there haven't been any," says Sue, remembering her struggle to get help for her father. "And nobody seems to think this is important. It reminds me of AIDS in the Eighties. People didn't want to hear about it. Had we paid more attention then, possibly it wouldn't have mushroomed.