Blood disorder patient pushes for drug funding

Torontowoman Hilary Handley is stepping up her fight to get the government to pay for an expensive medication that could help her battle a rare blood disorder.

Handley, 53, has paroxysmal nocturnal hemoglobinuria, or PNH,a rare disorder that causes her immune system to destroy red blood cells, leaving her at risk of developing deadly blood clots at any time.

"I'm scared that I won't to get to retire, I won't see the kids grow up, get married," Handley told CBC's Genevieve Tomney on Monday.

PNH is extremely rare, with only 90 confirmed cases in Canada. Bone marrow transplants and transfusions have helped some people,and a less intrusive treatment is available with Soliris, a drug approved by Health Canada.

The problem isSoliris costs $500,000 a year and is not covered by Ontario's drug benefit program.

"We question what price you put on people's lives," said John Girard, Hilary'shusband.

Research suggests half of all PNH patients die within 10 years of diagnosis.

Montreal resident Barry Katsoff, who has PNH, is convinced Soliris saved his life.

"My kidneys are back in shape, my liver is normal size and I am back on my bicycle," Katsoff told CBC News.

Quebec is the only province in Canada that covers the drug.

Because PNH is so rare, the data on the disease is, too, which is why the Ontario government has so far refused to pay for Soliris.

Ontario Health Minister Deb Matthews said funding for Soliris is up for review, but she did not give a timeline for a decision.

"They do look at the cost and the evidence to make decisions about what is funded and what is not funded," Matthews said. "We do not fund every drug in this province."