Life-or-death situation prompts urgent questions

NEWS RELEASE
Ted Arnott, MPP
Wellington – Halton Hills

FOR IMMEDIATE RELEASE
November 22, 2010

Life-or-death situation prompts urgent questions
(Queen’s Park) – Eight patients in Ontario, according to published reports, are still waiting to gain access to drug therapy to treat Paroxysmal Nocturnal Haemoglobinuria (PNH)—an extremely rare blood disorder.

One of those patients is Wellington County resident Lucas Maciesza, 26, who is extremely ill in
hospital. His doctors say he requires immediate access to Soliris, an intravenous medication, at a cost of $500,000 per year.

“The Government of Ontario must review its policies at once to accommodate the treatment Lucas needs,” said Wellington-Halton Hills MPP Ted Arnott. “This is, literally, a life-or-death situation.”

Having found out about Mr. Maciesza on Friday, November 19, Mr. Arnott tracked down his father, Rick Maciesza, to offer help. He then contacted senior staff in the office of the Minister of Health, urging the minister’s immediate intervention.

Rick Maciesza asked Mr. Arnott to read a statement in the Ontario Legislature to inform MPPs of his son’s condition.

Today Mr. Arnott brought that statement in a direct question to the Minister of Health:

“We request that immediate action be taken by the government of Ontario and Soliris be approved
for Lucas and all who are suffering with this disease,” Mr. Arnott read from Mr. Maciesza’s
statement. “When will the minister take that step to save Lucas’s life?”

In response, the minister indicated she has asked for a quick review of the evidence to ensure that people who could benefit from this drug do gain access.

In a supplementary question, however, MPP Christine Elliott, who serves as PC Critic to the Minister of Health, noted that Health Canada had already approved the use of the drug. She further pointed to inconsistencies in providing the drug based on geography.

“This is a clear example of some people being able to get treatments in hospitals where they live,
while others are left out in the cold,” Ms. Elliott told the Legislature.

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Attached: Text of Mr. Arnott’s question (Hansard record to be provided when available)

Ted Arnott, MPP
Phone: 416-325-3880
Email: ted.arnott@pc.ola.org