October 8, 2013

Justin with Global News at LegislatureThis week, the Canadian Association of PNH Patients’ president Barry Katsof sent an open letter to New Brunswick’s Minister of Health, Hugh Flemming, calling on the province to immediately implement its life-saving Catastrophic Drug Program. The letter came less than a week after the launch of PEI’s own plan on October 1, just under six months after it was announced.

In June 2013, Minister Flemming made a public commitment to the people of New Brunswick that parts of the Catastrophic Drug Program would be rolled out by the fall. However, it is now October and it appears that the Minister has broken that promise, leaving patients’ lives at risk including Saint John resident Mark Brennan, the only PNH patient in Canada still awaiting public funding for eculizumab.

Also in June, Barry, along with PNH patient Justin Manuel, met with the Minister of Health and offered a no-cost solution to help PNH patients access the treatment they need. Similar to Quebec, this solution would obligate private insurers to follow the government’s leadership and cover drugs that are on the formulary – like eculizumab for PNH. What’s more, the Canadian Life and Health Insurance Association established a pooling framework to spread the risk of recurrent, high-cost prescription drug claims across all participating insurers. With these two provisions in place, Barry feels there is no excuse for the Ministry to not fund eculizumab.

The Association took this open letter to media, and several interviews have taken place, and are scheduled for this week. Stay tuned for an update.