Lucas Maciesza received another dose of the drug he needs to save his life. But the Government of Ontario still hasn’t agreed to pay the long-term costs.
On Dec. 8, Wellington-Halton Hills MPP Ted Arnott again took Lucas’s situation to the Legislature, where he delivered the following remarks:
“I’m glad the Minister of Health and her parliamentary assistant are in the chamber and can hear this statement.
“Wellington County resident Lucas Maciesza suffers from PNH, a rare blood disease. Despite repeated questions in this House and despite widespread media coverage, he’s still waiting for assurance that over the long-term term this government will pay for Soliris, the medication he needs to save his life.
“The good News is that it’s already working, after the London Health Sciences Centre stepped in to provide the Soliris, pending the ministry’s expedited review.
“Still waiting for the government, the London hospital provided another dose yesterday. But this may not continue indefinitely.
“Last night, I spoke to Rick Maciesza, Lucas’s father. Week to week, his family wonders whether Lucas will receive the medication he needs. Week to week his family wonders whether he will live or die. It’s totally and completely unacceptable that they should have to live like that. They need and deserve certainty.
“I want to quote from Dave Meyer’s recent editorial in the Wellington Advertiser: ‘We firmly salute the doctors who had the guts to start Lucas on Soliris, even if it is only for a short time.’
“His doctor, Ian Chin-Yee writes: Lucas ‘will almost certainly benefit from Soliris, yet the question of funding remains as his family struggles, not knowing how they will bear the cost of this treatment.’ In fact, Dr. Chin-Yee wrote this long column, which was published in the Guelph Mercury just recently.
“We need to know when this government will finally agree to provide long-term assurance that he will receive this essential medication. Let’s give Lucas and his family the Christmas present that they deserve.”
