One year later, HTLV-1 study gets underway

SARA MINOGUE

Almost one year after a rare and potentially deadly virus was discovered in Nunavut, the health department is beginning a study to determine how far HTLV-1 has spread.

The study could take up to a year to complete, and until then, the Government of Nunavut won’t know exactly how serious the outbreak is, and how to respond.

At a press conference last October, Dr. Isaac Sobol, Nunavut’s chief medical officer of health, said testing would soon begin to determine how common the virus is among Nunavut residents. The results were expected within six months.

But six months later, the Government of Nunavut is only beginning that study.

“It turned out that the study needed to be reviewed by the ethics review board that is part of the federal system,” said Nancy Campbell, a spokesperson for the GN health department.

“We have done a number of things to make sure that they are satisfied that we are behaving ethically and that people are fully informed.”

The ethical issue was related to privacy.

If you have your blood drawn for any reason, you could be participating in the “sero-prevalency” test for HTLV-1.

To find out how prevalent HTLV-1 is among Nunavut residents, the health department will study blood samples taken from across the territory. The study tests the leftover blood that the lab would otherwise throw away.

By the time blood samples arrive for HTLV-1 testing, they won’t contain any personal information – only demographic information such as a person’s age or sex.

People who are having blood taken will be informed, by a poster in their health centre, that they are participating in the study, and can opt not to take part.

Human T-cell Lymphotropic Virus, Type 1, or HTLV-1, was first detected in a person with adult T-cell lymphoma-leukemia in June 2004. By October, one person had already died from an illness linked to the virus, and up to 20 others had been found infected.

HTLV-1 is a retrovirus in the same category as HIV. It is spread through unprotected sex, needle-sharing or from mothers to their babies.

Only four per cent of people who are infected with the virus will ever get sick from it, but if you do get sick, there is no cure.

Symptoms may involve 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.

Since the health department announced the discovery of the disease, they have offered free testing, no questions asked, to anyone who is worried they may be at risk.

So far, Campbell said, over 200 people have come forward to get tested at local health centers.

Pregnant women are also offered free tests, as part of the regular screening process for healthy babies.

Dr. Sobol was not available this week to say whether the testing that has already been done has turned up any more cases of HTLV-1 in Nunavut.