The Canadian Association of PNH Patients applauds governments across Canada for their landmark agreement to provide public access to Soliris, a life-saving treatment for the ultra-rare blood disease, PNH. With this agreement, Canada joins the vast majority of jurisdictions in the developed world that ensure access to Soliris for their citizens through government funding.

“We are so thrilled to receive the incredible news today that Canadians living with PNH will now receive government funding for this miracle treatment that saved my life,” says Lucas Maciesza. “I can’t begin to express my gratitude to the Ontario government for coming to my rescue at my family’s greatest time of need, and to all the incredible people who supported us along the way.”

Since the treatment was approved by Health Canada in early 2009, the issue of inequitable access to Soliris across Canada raised a question of ethics among patients and medical experts. Those without private insurance were unable to receive the treatment through their provincial drug plan, while some patients had access to the drug through private coverage and others did not. A long-term funding solution for Soliris was sought by Canadian PNH patient and physician advocates, who appealed to their own provincial governments for support.

“The provinces are to be commended for their commitment to providing equitable access to the care that PNH patients require and deserve. Under Ontario’s leadership, the cooperation and dedication they have shown in supporting patients with this rare disease is truly groundbreaking,” says Barry Katsof, Founder and President of the Canadian Association of PNH Patients. “This news is welcomed with great relief by our community of patients and their loved ones. We thank you for giving us our lives back.”

To read the full news release, please click here.