June 18, 2013

Several months after the Canadian Association of PNH Patients’ initial visit to the New Brunswick legislature, the issue of the province’s promised catastrophic drug program continues to weigh heavily on the minds of the PNH community.

Despite New Brunswick’s announcement of a catastrophic drug plan six months ago, the Canadian Association of PNH Patients is still very concerned that the Minister of Health Ted Flemming continues to delay implementation of legislation that would provide patients with access to the drug eculizumab, which would save the lives of PNH patients in New Brunswick.

Canadian Association of PNH Patients founder and president, Barry Katsof, attended Question Period at the New Brunswick Legislature on Tuesday, June 18, to express concern for the government’s lack of urgency on this life-or-death issue. Barry was accompanied by 21-year-old Justin Manuel, a PNH patient from Riverview, N.B. who is currently attending Mount Alison University. Justin is relieved to hear that catastrophic drug coverage is coming, as he will no longer be covered under his father’s employee drug plan once he graduates.

This visit to the Legislature was prompted by Prince Edward Island’s recent announcement that its catastrophic drug program will be up and running as of October 1, 2013, whereas Minister Flemming’s lengthy stakeholder consultation process will stall the New Brunswick catastrophic drug program launch until the summer of 2014. Further fueling the PNH community’s frustration is the Health Minister’s acknowledgement that the activation of New Brunswick’s catastrophic drug plan would obligate private insurers to cover drugs that are currently on the province’s drug formulary. eculizumab is one of those drugs that would receive private funding, but the government refuses to put this no-cost solution into immediate action.

As a result of this legislature visit, the Health Minister announced that parts of the catastrophic drug plan, including coverage of expensive drugs, will be rolled out as early as fall 2013. The Canadian Association of PNH Patients is hopeful that the government will stay true to its word, but will continue to apply pressure until eculizumab is funded for all PNH patients who require publicly-funded access.

Barry and Justin were interviewed by the news outlets below.


Telegraph-Journal – Push on for drug coverage – June 19, 2013
Times & Transcript – Minister promises drug plan – June 19, 2013
Times & Transcript – Catastrophic drug plan urged –  June 18, 2013

Global News New Brunswick – Catastrophic drug program –

CBC News New Brunswick:
Global Post:
CTV News Atlantic:
Yahoo! Canada News:
MSN News Canada:
NewsTalk 610 CKTB:
News 88.9:
Yorkton This Week:
The Chief:
CHSJ Country 94.1:
Thompson Citizen:
Halifax Herald News:
Winnipeg Free Press:
Brandon Sun:
K 94.5 Today’s Best Music:
95 CKNB:
Moncton Free Press:
MAX FM 103.9:
Yorkton News: The News Review: