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Editorial: Lyme disease needs research

Elizabeth May has achieved something of a miracle — the MP for Saanich-Gulf Islands and the leader of the federal Green party got a private-member’s bill through Parliament with unanimous approval.

Elizabeth May has achieved something of a miracle — the MP for Saanich-Gulf Islands and the leader of the federal Green party got a private-member’s bill through Parliament with unanimous approval.

More important, the bill opens the door to better diagnosis and treatment of a serious disease that many say is a growing threat to the health of Canadians.

May’s bill, passed by Parliament Wednesday, calls for a national strategy in public education, prevention, diagnosis and treatment of Lyme disease, which is spread by ticks and can result in debilitating chronic illness if left untreated. If detected in its early stages, the infection can be successfully treated with a course of antibiotics.

The disease is relatively easily prevented by wearing suitable clothing when walking in long grass and underbrush (even in urban areas) and taking showers immediately after such excursions. Laundering or drying clothing on high heat also gets rid of ticks.

For David Cubberley of Saanich, the passage of May’s bill is good news.

He first became interested in Lyme disease while serving as an NDP MLA and opposition health critic. He met people concerned that the approach to Lyme disease by the public health system is deficient.

“They made me aware of the disease, problems with detection, problems getting treated,” says Cubberley, who is now B.C. director of the Canadian Lyme Disease Foundation.

“That set me off on a path where I began to do some research. I became convinced very quickly.”

He said the government’s best practices regarding Lyme disease are so restrictive that few cases of the disease are detected, “so a large number of people are forced to live with an undiagnosed, chronic disease that disables in time, and can even kill.”

In B.C., testing for Lyme disease is done in two phases, but Cubberley says the first test is ineffective in detecting the infection in its early stages. A negative test means the second phase isn’t applied, and closes the door on further testing and treatment.

Also, testing is geared to only one strain of bacteria carried by ticks, when infection can be caused by other strains.

Cubberley described the test used in B.C. as “junk.”

“We’ve said for a long time that existing best practices are not based on sound, peer-reviewed science; they are largely based on expert opinion and the experts are all from one side of the argument.”

Public health authorities have said the number of ticks carrying the bacteria is low, and only a small percentage of those bitten by ticks will be infected.

But Cubberley said recognition is growing that the incidence of Lyme disease has been vastly understated. The U.S. Centers for Disease Control have consistently reported about 20,000 to 30,000 case of the illness in the U.S. each year, but after research, have upgraded the estimate to 300,000. Based on that, he said, Canada could expect to have 30,000 cases year.

The passage of the bill reflects the growing awareness of Lyme disease, he said.

“It shows that the incidence is widespread, that other MPs have been dealing with it in their constituency offices, that people have been complaining they can’t access health care treatment for this disease,” Cubberley said.

He said the new act is only a beginning. “It creates a vehicle to make positive change,” he said.

That change is needed. Lyme disease has too often been brushed aside as a rare occurrence, not something to cause undue alarm. But to those who suffer from the illness and can’t get adequate treatment, there’s good reason for alarm.

And with signs that the incidence of the disease is growing, it’s time to apply rigorous science to preventing, detecting and treating the disease.