EDMONTON, AB : The NDP government should review current regulations related to the Short Term Exceptional Drug Therapy Program (STEP) so that a 17-year-old Alberta teen, Hayley Chisholm, can receive access to the life-saving drug Soliris, the Wildrose Official Opposition said.
At age ten, Hayley was diagnosed with C3 glomerulopathy, which affects the kidneys and has gradually worsened over the past six years. To date, her family has been unsuccessful in receiving funding for the $700,000 per year drug Soliris, which could improve Hayley’s quality of life and potentially extend it.
“Albertans are rightfully proud of our healthcare system which is meant to provide universal access,” Wildrose Leader Brian Jean said. “But as the system stands now, it is letting Hayley fall through the cracks when she needs it most. The NDP government should do the right thing and find funding for Hayley’s treatment.”
The government did not commit to funding during questions at the Legislature. C3 glomerulopathy is so rare that funding a drug trial through Health Canada would not be economically feasible, as less than 50 Canadians would be impacted. The Chisholm family has met roadblocks every step of the way in attempting to secure funding for the drug, and is now turning to the province.
“Systemic changes need to be made to our healthcare system to support Albertans like Hayley suffering from rare diseases,” Wildrose Shadow Health Minister Drew Barnes said. “Wildrose will continue to urge the NDP government to fund this treatment, which would give a young Albertan the quality of life she deserves.”