Virus source could be Clyde

The rare and deadly HTLV-1 virus was first discovered in the community of Clyde River, according to one high-ranking government official.
But Nunavut’s chief medical officer of health, Dr. Isaac Sobol, won’t confirm any information that might disclose the identity of those infected.

“We’re never going to mention any community, because we’re protecting confidentiality,” he said.

And because of the mobility of Nunavut residents, no one should assume they’re safe in having unprotected sex or share needles anywhere in the territory.

Human T-cell Lymphotropic Virus, Type 1, is a retrovirus in the same category as AIDS. It is spread through unprotected sex, needle-sharing or transmitted by mothers to their babies.

At least one person has already died from the virus, and up to 20 cases have been discovered in the territory. Health officials knew about the virus for three months before making their discovery public on Sept. 30.

Only four per cent of those infected with the virus get sick from it, but for those who do, there is no cure. Symptoms include a loss of strength in the lower limbs and a loss of bladder control. Eventually, victims can develop cancers of the blood — leukemia or lymphoma — and diseases of the nervous system. It usually takes 10 to 20 years for the virus to trigger these diseases.

In mid-September a 29-year-old Clyde River man died in an Ottawa hospital. His brother, who flew down to visit him, said he died from a rare virus that attacked his blood, but adds he didn’t know whether it was HTLV-1.

The Ottawa hospital has similar confidentiality policies as the Government of Nunavut and won’t disclose the cause of deaths of patients without their names and family approval.

“I heard there was some kind of disease,” said Clyde River resident Peter Iqalukjuak. He also saw about six nurses come to town in September, although their purpose in the community wasn’t clear.

“Behind closed doors, I heard something’s wrong.”

Jakob Gearheard from the Ilisaqsivik Society, which provides health and wellness services in Clyde River, says that if there’s an HTLV-1 outbreak in his community, he’s disappointed they weren’t consulted by the government.

“I’d be very interested, as a director of a wellness centre, of what role we could play.”

The Ilisaqsivik Society encourages breast-feeding, and Gearheard wants to know if this policy should change because of the virus.

“Right now it’s shrouded in so much secrecy. There’s a little bit of fear of the unknown.”

When Japan dealt with an HTLV-1 outbreak, its government discouraged residents from breast-feeding. Sobol said he hopes it doesn’t come to that in Nunavut, because breast-feeding offers many health benefits for children.

The government hopes to know how widespread the virus is by this spring, after a territory-wide survey is complete. Only then will they know the number of infected women, and whether breast-feeding policies could put children at risk, Sobol said.

Nunavummiut can safely avoid the disease by always having sex with a condom, and not sharing needles for tattooing and drugs. The disease can’t be spread through casual contact, such as kissing or shaking hands.

The government survey includes checking blood samples taken in Nunavut for the virus. Residents should know their identity is not linked to these routine blood tests, Sobol said. It’s only done to determine how prevalent the virus is in Nunavut.

Health officials have also attempted to get in touch with everyone who may be at risk because of past contact with someone who’s been identified as infected.

Free, confidential blood tests are available at health centres across Nunavut. It can take four to six weeks for results.

Community health workers across Nunavut were first briefed about the virus by health officials via videoconference. Community health representatives have been asked to meet with hamlet councils to provide them with information.

HTLV-1 is extremely rare in Canada. The last outbreak was in 1993 in B.C., when three people were found with the disease.