A Transcona man is fighting for his life as he battles with the provincial government.
Glen Dornian was diagnosed with atypical Hemolytic-Uremic Syndrome (aHUS) in 2009, and since then, he has been unable to continue his job as a painter at New Flyer.
"I was really, really tired, (had) no appetite," said Dornian, 49. "It was like having the flu and being hung over really bad.
"My kid was bugging me to go to the doctor, and I got some blood work, went back to work, and when I got home, there were three or four messages from St. B (St. Boniface Hospital) emergency telling me to come down there. Next thing I know, I was in there for three weeks and they’re telling me ‘your kidneys are shot because of this aHUS.’"
Dornian was on dialysis for two years as doctors searched for a kidney match, eventually finding one from his sister. After a biopsy in June, it was discovered the disease had returned.
He has undergone 23 rounds of plasmapheresis since then, and fears he may have to go back on dialysis unless he is able to access Soliris, a drug approved to treat the disease by Health Canada in March. Soliris is approved in Manitoba for some uses, but a panel of physicians that rules on whether to fund drugs declined to fund Soliris to treat aHUS.
"I was on dialysis before and it didn’t go very good. It’s super hard on your body," Dornian said. "My life expectancy, getting treated like that, with aHUS, isn’t long. I don’t know what the stats are. I don’t even want to see them, but I know they’re not good."
Dornian said he has repeatedly attempted to contact both former Health Minister Theresa Oswald and current Health Minister Erin Selby to plead his case, but said he has not heard back from either. Oswald served as the minister until a cabinet shuffle on Oct. 18 placed Selby in the position.
"I’ve emailed and emailed and emailed about it," Dornian said, noting one of his doctors told him the drug company, Alexion, has offered to help offset the cost. "They’re not responding."
Dornian said his physician has also been frustrated by the lack of communication.
Robert Shaffer, the acting executive director of the Provincial Drug Program, said the independent Canadian Agency for Drugs and Technologies in Health (CADTH) review recommended against funding Soliris. The CADTH conducts reviews of products after they are approved by Health Canada, and then the Manitoba Drug Standards and Therapeutics Committee looks at the review and then provides a recommendation to the Manitoba Health.
"The review that they’ve provided all the jurisdictions is that we not fund this product because there’s not enough evidence for the clinical indication that was put forward for it to be used for," Shaffer said.
Shaffer said even though the committee has not initially recommended to fund the drug, there are steps Dornian and his physician can take to try to get it covered.
"A treating physician, in consultation with the patient, has every right to make a recommendation for an exception against that standing," Shaffer said, noting the treating physician can write into the committee with a rationale, and the committee will review the request for exception.