WINNIPEG — Glen Dornian used to love walking his dogs and took pride in his work. Now the 49-year-old says his body is a ticking time bomb.
Dornian has a life-threatening genetic condition called atypical Hemolytic Uremic Syndrome (aHUS), a disease that causes small blood clots that kill the body’s red blood cells and damage the kidneys, eventually leading to their failure.
Dornian was diagnosed in 2009. He had felt sick for about a month before he went in for a checkup.
“I was swelling up, gaining weight, just didn’t feel good — like having a really bad case of the flu,” Dornian told Global News Thursday.
He was told at the time that his kidneys were shot and was put on dialysis until in 2011 his sister donated one of her organs for transplant.
Just over a year later, he’s sick again and at risk of losing his new kidney.
His doctor at Transplant Manitoba has recommended and applied for funding for the drug Soliris, which will help clear the clots and save his life.
The province won’t pay, citing lack of proven research.
“All medications come with a benefit and harm and there are recommendations to not use them,” said Robert Shaffer, the exectuive director of Manitoba Health’s Provincial Drug Program. “We take a strong safety stance on that.”
Manitoba does approve the drug for another rare blood condition, but not aHUS, something Dornian has a hard time understanding as he continues to get worse.
“This is the end of the road. From here I think it’s only a matter of a few weeks before I end up back in dialysis.”
The treatment can cost anywhere from $450,000 to $700,000. The only place in Canada where it’s being funded is Quebec for a few patients in an exceptional access program.
Dornian has appealed for help to his MLA and Manitoba Health Minister Erin Selby. Selby wouldn’t make herself available for an interview; a spokesperson said decisions are made by medical experts, not the minister.