A Winnipeg man living with a rare genetic disorder said there’s a drug that could help him, but it’s not funded by the province.
Glen Dornian used to enjoy walking his dogs. Now, he said it’s a struggle just to sort through laundry.
He has a rare genetic condition that tricks his immune system into attacking both healthy and unhealthy red blood cells.
“These cells are being destroyed, so you don’t have any energy,” said Dornian.
It’s called atypical Hemolytic uremic Syndrome (aHUS).
Between 60 and 90 Canadians have the disease, which can cause blood clots, swelling and kidney damage.
Dornian said he was diagnosed four years ago.
“I had a big bad headache, no appetite, vomiting. I started to swell and I have water weight all over,” he said.
Dorian was put on dialysis, but in 2011 he received a new kidney after his sister was found to be a match.
After the disease returned, his transplant doctors told him to apply for a drug called Soliris. It costs more than $500,000 a year, and is not covered under the provincial drug plan due to a lack of research.
“The common drug review listed the fact that there wasn’t enough clinical evidence behind the drug for that specific use,” said Robert Shaffer, acting executive director of the Manitoba drug policy program.
Soliris is approved by Health Canada and it’s funded in Manitoba for another blood disease. In Quebec, the drug is also covered for aHUS, under an exceptional access program.
Dornian said his doctors have appealed to the province to fund the drug for his condition. Without it, he said he will have to go back on dialysis for the rest of his life.
“I want a shot at a normal life. This way I can’t work,” he said.
