In nearly 35 years in the News business we have seen some stupid political moves and wanted to place a steel toed boot hard up against the keisters of some mealy-mouthed politicians, but nothing has made us as angry as the case of Lucas Maciesza.
The 26-year-old Mount Forest man suffers from Paraoxysmla Nocturnal Haemoglobinuriea, a rare blood disorder that can be treated only by Soliris, which costs $500,000 a year and is something he would have to take for life. The Toronto Star uncovered the News that some people in Ontario get that treatment paid for – and others do not. The first reason to be angry is that in a so called equitable society, that is an ugly wrong.
Lucas had his first treatment of Soliris last week (paid for by London Health Sciences Hospital) and doctors were amazed at how well he responded. Soliris worked on him – as it has on many others.
But, enter the politicians needing a kick. Dalton McGuinty lied about no new taxes when he was elected in 2003. He slapped a health tax on us. Doing only rough calculations, the taxpayers in Mount Forest alone, at about $1,000 a person, have already paid enough in that health tax for Lucas to live on Soliris for four years.
Our memory goes back farther than McGuinty’s arrival as premier. The medicare debates in the 1960s had the argument nobody should have to go broke or die just because they could not afford health care. Read that again. That’s why we are supposed to have universal health care. Some people claim that universality is what sets us apart as Canadians.
Tell that to the Maciesza family, which has been to Europe and Mexico searching for a cure since Lucas was 19.
The Toronto Star stated in an editorial on Monday that Health Minister Deb Matthews argues, “It is no longer politicians who decide what drugs are covered under the Ontario Drug Benefit Plan and what drugs are not. We have an arm’s length expert group that reviews all of the evidence and makes the very difficult decisions.”
God help us that we should force politicians to make “difficult decisions.” A faceless committee gets to pass a death sentence, protecting all those holier-than-thou politicos who might otherwise be embarrassed by nasty questions at election time. It is better for them to hide behind the bureaucracy. The faceless, nameless wonders will instead decide who lives and who dies. Worried yet?
We firmly salute the doctors who had the guts to start Lucas on Soliris, even if it is only for a short time.
But the province, including McGuinty, Matthews and Lucas’ MPP, that silent cabinet minister, John Wilkinson, should get off their duffs and provide the man with the drugs he needs.
Expensive drug? Hell, this province could have treated hundreds of Lucases for years with the billion dollars this government poured down the rat hole on ehealth. How many more wasted dollars does it take before we start considering people’s lives, rather than face-saving politicians and their “arm’s length expert group.” The drug is used in many places to treat PNH and Lucas has more than a right to it, he has a moral claim on this society.
The Star editorial ended with a tepid “There are no easy answers here. We all need to be prepared to debate as a society how we proceed.”
Our conclusion is different. Stop dithering and playing God with this man’s life and give Lucas the damned drug now – and for the rest of his life. We’ve all paid for it – through our taxes.