Man with rare disease urges province to cover drug costs

A Winnipeg man says his kidneys are shutting down because he cannot afford medication that could save his life, and the Manitoba government won't cover the cost.

Glen Dornian, 49, suffers from atypical Hemolytic Uremic Syndrome (aHUS), a rare condition that creates blood clots that damage the kidneys.

Dornian says he cannot work because he feels tired, nauseous and worn out every day, and his feet and legs are constantly swollen. He takes 15 different medications a day.

The transplanted kidney Dornian received in 2011 is failing, and he has undergone 23 blood transfusions since August.

Dornian said his doctor has recommended he take Soliris, a prescription drug that is covered under Manitoba Health's drug program for a different blood condition.

However, the drug is not covered for the treatment of Dornian's condition.

"Just sitting here and knowing that it's there and I can't have it," he told CBC News on Thursday.

"I'm on a time schedule here. In a few weeks, it'll be too late for it anyway."

Dornian said he takes roughly $4,000 worth of medications a month, but Soliris could cost upwards of thousands of dollars more.

The provincial government says Soliris has not been clinically approved for the treatment of aHUS.

"It's not applicable or not appropriate at this time. The evidence doesn't support using it in that clinical way," said Robert Shaffer, the acting executive director of Provincial Drug Programs.

However, Shaffer said specific cases can be reviewed by a panel to make an exception.

"The perspectives of the physician who's treating the patient at the time would be first and foremost, and that review would then be undertaken to see whether a consideration to an exception would occur," he said.

Dornian said he will continue lobbying for coverage, but he's running out of time and he's afraid kidney dialysis is in his near future.

"There's no quality of life. The symptoms will still be there," he said.

"My blood will get cleaned three times a week, but I'll be chained to that hospital for however long I live."