Garrett Shakespeare, a North Vancouver swim instructor and nightclub DJ, turned 23 on July 22. When you have lived more than a decade with paroxysmal nocturnal haemoglobinuria (PNH), a rare and fatal blood disease, you don’t take such events for granted. But this birthday was special: he got back his life. Thanks to a joint purchase agreement reached among Canada’s premiers, announced coincidentally on his birthday, Shakespeare and other PNH sufferers have started treatment with Soliris, one of the world’s most expensive drugs, but one shown to restore health and longevity in those with the disorder.
“I’m so happy,” says Shakespeare, who has lived with debilitating pain, frequent hospitalization and the threat of organ failure or a fatal blood clot because the B.C. drug plan had deemed Soliris not “cost effective.” The drug costs about $500,000 a year, and patients require treatment for the rest of their lives. In June, Maclean’s wrote about Shakespeare’s plight in a story about the inequities caused by the lack of a national pharmacare strategy. There are fewer than 90 Canadians with PNH. Some had treatment paid through private health plans, some in Ontario and Quebec were treated on compassionate grounds, others did without. About 30 other countries provide the drug free for PNH patients.
Shakespeare and his mother, Rita, learned he’d get the drug in a meeting with provincial Health Minister Mike de Jong. “She started crying right away,” Garrett said of his mother’s joyous reaction, “and didn’t stop the whole way home.” He praises the lobbying efforts of Barry Katsof, a fellow sufferer and the founder of the Montreal-based Canadian Association of PNH Patients. Katsof, a 63-year-old retired businessman, receives Soliris under a Quebec program. He calls it “a miracle drug” that restored his health. Katsof said the provinces negotiated an unspecified price reduction, something he hopes will inspire greater co-operation and an equitable, cost-effective national drug strategy. “This is truly life-saving and life-altering for people.”