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Hilary Handley – Toronto, Ontario

Hilary HandleyToronto resident Hilary Handley is among an estimated 90 Canadians living with PNH (paroxysmal nocturnal haemoglobinuria). After the initial onset of symptoms, Hilary began to feel her body deteriorate and her quality of life diminish. Due to haemolysis, her red blood cell levels decreased and caused extreme fatigue and shortness of breath. Hilary lived every day in fear of having a stroke, heart attack, organ failure, or dying of a blood clot.

A life-saving but costly treatment for PNH called Soliris was approved by Health Canada in 2009. A lucky few patients received funding for the drug through private insurance or through exceptional access programs, but most patients – including Hilary – did not have access to Soliris, either through private insurance or through their provincial drug plans. But she couldn’t just stand by and wait for something to happen, so with her family beside her, she became an advocate.

Starting in June of 2010 and throughout 2011, Hilary and many others urged the Ontario government to act immediately to ensure that all PNH patients had access to Soliris through provincial funding. In July of 2011, all provinces (except for Quebec) signed a groundbreaking agreement to provide Soliris to all Canadians with PNH. Hilary received her first infusion of the drug the following month. “I was thrilled and relieved when I heard the news. I haven’t really stopped smiling!” Hilary recalls.

Today, Hilary says she feels great. She is now able to work full-time, and even is taking an intensive cardio exercise class. “My life has pretty much gone back to normal, I consider myself a lucky person,” Hilary says. “I now just live my regular life.”

Looking back on her fight for access to Soliris, Hilary expresses her appreciation for the support of her husband, family, friends and all the people in her neighbourhood who wrote letters and signed petitions. Her husband practically stopped working to search for ways to help her, and her close friends accompanied her to appointments and blood transfusions. “You really need a supportive network of people to talk to, someone to go to the doctors with you, and listen to you.”

When it came to adjusting to life on treatment, Hilary expected to feel better instantly. While she did feel the effects of treatment right away, it took some time for the physical benefits to catch up with the psychological “high” of being on treatment she knew would save her life.

“After about six months of treatments, I felt that I was on track again.” Looking ahead, Hilary says she’s excited about the future.