Baffling Brain Ailment Hits Heroin Smokers

A UBC study has shed new light on a mysterious and often fatal brain disorder caused by smoking heroin.

Sian Spacey, a UBC neurologist, told the Georgia Straight that researchers have been compiling data on 14 patients with toxic leukoencephalopathy dating back two years. She said it's the largest study of the disorder ever conducted in North America.

All the patients became severely disabled after "chasing the dragon", which is the street term for inhaling the smoke from heroin burned on aluminum foil. All but one were in their 20s and 30s.

"This tends to be a habit of younger people," Spacey said. "This is what's so tragic about it. None of these patients have been the down-and-out type. The drugs have been delivered to their homes."

A 1982 study published in the British medical journal the Lancet estimated that heroin-induced leukoencephalopathy had a 23-percent mortality rate. Spacey said half the patients in the UBC group died, which suggests the mortality rate could be higher than previously believed.

"The prognosis is very poor," she said, noting that there is no treatment.

Spacey, a UBC assistant professor of medicine, said researchers believe that leukoencephalopathy might be caused by a toxic agent cut into the heroin. One patient gave her a sample of heroin ingested during the period when symptoms developed. The sample was sent to a lab for testing and came back negative for any toxins, which disappointed Spacey. "It might be a combination of the aluminum, the heroin, and what's cut into it," she said.

After the initial exposure to the toxin, patients suffer structural changes in their brains. Spacey said this causes slurred speech, uncoordinated movement, and unsteadiness, making the patients appear as though they're drunk.

She added that their condition might deteriorate for about two weeks before they seek medical attention. Because it takes a while before people see a doctor, the patients don't always link their symptoms back to smoking heroin.

Spacey said the toxic agent causing the disorder might be stored in body fat, which could explain why it takes several weeks to reveal its full effect. People with the disorder lose the myelin coating their nerves.

A couple of months later, she said, their brains begin swelling, which sometimes causes death. "It seems to be more of a slowly progressive thing that's occurring," she said. "It's only after you have this accumulation of patients that it's possible to put this picture together."

Those who survive often can't carry on a conversation and end up spending their lives in long-term care homes. She said it is especially difficult for young people to live in a facility populated with older patients.

"Most physicians don't know what it is and what to expect from the condition," Spacey said. "Therefore, they don't know what to tell the patients and they don't know if there is, in fact, anything available with regards to treatment or intervention."

Last November, the Vancouver Coastal Health Authority reported that 17 people in B.C. developed toxic leukoencephalopathy in the first six months of last year after chasing the dragon. In 2003, the BC Coroners Service began recording deaths caused by heroin-induced leukoencephalopathy; the service recorded six deaths last year, with five of those in Greater Vancouver and one in Kelowna.

VCHA chief medical officer John Blatherwick told the Straight that in each of the past two years, new cases have surfaced during the month of January. "This is when it seems to reappear," he said. "This is why I'm interested in reports of it."

Blatherwick said some people smoke heroin because they fear they might contract AIDS by using a needle. He said that often these people don't realize that smoking the drug can also be fatal.

"The safest way is to inject with clean needles all the time," Blatherwick said.

In a VCHA news release issued last November, Blatherwick encouraged heroin smokers to seek addiction treatment. Blatherwick also encouraged physicians to contact their local medical health officer if any patients with a history of smoking heroin show symptoms of leukoencephalopathy.

Brian Rees, a 44-year-old drug user on the Downtown Eastside, told the Straight that inhaling heroin is often a precursor to injecting drugs. "It's one of the ways they get into their addiction," he said.

Rees added that young girls entering the sex trade on the Downtown Eastside sometimes believe that they will earn more money if they don't show any visible signs of drug use. "They still have a little bit of vanity when they first get there," he said. "That keeps them from having track marks."

Ann Livingston, project coordinator with the Vancouver Area Network of Drug Users, told the Straight that Downtown Eastside addicts almost always prefer injecting heroin because they consider it "wasteful" to smoke or inhale it.

She said the only people she knows who've suffered brain damage from smoking heroin are very young. "As they become more and more addicted to heroin, there is a sort of hesitancy on their part to inject because that makes you a real addict like the ones downtown," she said.

Livingston said VANDU members are going to start a lobbying campaign to get drugs tested for their safety. She said the group has already hosted two committee meetings on this issue.

She added that if the RCMP can test drugs for the purpose of charging people, she sees no reason why the police or Health Canada couldn't also conduct tests to ensure that dangerous substances aren't cut into heroin.

"We're looking...to try and get funding to do it," Livingston said. "The big fuss [the authorities] will want to make is these are illegal drugs."

In 2002, the coroners service reported that there were 49 overdose deaths from all forms of illicit drugs in Vancouver. Very preliminary statistics indicate there were 56 illicit-drug overdose deaths in Vancouver and 170 illicit-drug overdose deaths across the province in 2003. Those numbers might increase pending completion of ongoing death investigations.

The number of illicit-drug overdose deaths in Vancouver has fallen significantly since the mid-to-late 1990s. Between 1995 and 1998, there were 598 deaths in the city, compared with 334 between 1999 and 2002.

Spacey said the annual prevalence of opiate abuse in Canada's population is 0.2 percent, which is lower than the 0.5-percent rate in the United States.