Michele King of Red Deer, Alberta was diagnosed with the ultra-rare, progressive and fatal blood disease known as paroxysmal nocturnal haemoglobinuria (PNH) in 1990. Over time, Michele began to see and feel her body deteriorate and her quality of life diminish. She lived with a constant fear of developing a deadly blood clot.
After living with PNH for over 15 years, Michele joined a clinical trial for a new therapy called eculizumab, a life-saving treatment for PNH that was approved by Health Canada in 2009. At the time, Michele was one of the lucky few PNH patients to receive funding for the drug through private insurance, but most patients in Canada did not have access to eculizumab, either through private insurance or through their provincial drug plans.
When Michele first began treatment with eculizumab, her condition improved with her first infusion. “I never had stomach pain or esophageal spasms ever again,” she says. “The pain went away.” Though Michele had access to treatment, she constantly feared that her coverage would end at any time – and without public funding, she would have had no safety net.
When all provinces except for Quebec announced that they would provide public access to eculizumab for PNH patients in July 2011, Michele was ecstatic. Her partner’s insurance benefits had just recently been cut off, so the deal came at a perfect time.
Today, Michele has never felt better, and has regained her strength and energy. As a result, she is able to work full-time and participate in the same activities that a normal, healthy adult would. Michele rides her horse at least four times a week, and competed in – and won – her first horse show in June 2012.
When Michele’s health was deteriorating, her family and friends were extremely understanding of her condition. “They were fabulous and understood what I was going through when I didn’t feel well.” As Michele adjusted to life on treatment, she had to accept the twice-monthly infusions as part of her routine. “I remember how I felt before the drug, accept it, and move on.”
Michele played an important role in urging the Alberta government to ensure that all PNH patients in the province had access to eculizumab. She met with her MLA and shared her story with local media. Michele is discouraged that there are still some patients in Canada who are without access to eculizumab. “I believe anyone who needs access to the drug should get it,” she says. “It can make you a productive, healthy member of society that can contribute positively to a community.”
Michele feels excited about what her future holds. “I do anything I want to, now that I live pain-free.”