Ontario’s health ministry has yet to decide if it will pick up the cost of a $500,000-a-year drug that is keeping a dying Guelph-area man alive.

Lucas Maciesza has a deadly, extremely rare blood disorder. The disease causes the body to attack oxygen-rich red blood cells and leaves patients prone to internal bleeding.

The American-made drug Soliris has been hailed as a near cure for the disorder but the costs are prohibitive — $500,000-a-year — and patients are on it for life.

After a series of Star stories and public outcry that reached the Ontario Legislature, the London Health Sciences Centre stepped up to the plate and decided to pay for Maciesza’s Soliris as a temporary measure until the health ministry made a funding decision.

LHSC has purchased approximately $75,000 to date for Soliris.

In a maddening twist, Ontario did agree to cover the costs of Soliris for a North Bay woman, Norma Metz, on compassionate grounds. She suffers from the same disorder, paroxysmal nocturnal hemoglobinuria (PNH).

Meanwhile, as the province takes its time deciding, the hospital can only afford to pay for the drug until mid-January, according to Lucas’ father, Rick Maciesza.

“Then we are back to we either take him off it or we figure out how to fund it,” said the senior Maciesza. “The drug is working fantastic. But we are on pins and needles.”

This issue is something the ministry is continuing to work on actively over the holidays, said Neala Barton, press secretary for Health Minister Deb Matthews.

In a statement, Matthews said when it comes to deciding what drugs are paid for by the public, the province works “very hard to find the right balance between being compassionate and being responsible.”

Medical experts, not politicians, make the final decisions on what drugs to cover, Matthews added.

“The ministry is looking carefully at all the available evidence related to Soliris and will respond to the family’s request as quickly as possible,” she said.

But Maciesza’s life hangs in the balance.

He was admitted to London gravely ill near the end of November with extreme abdominal pain, malfunctioning kidneys and liver, and blood-filled urine.

His family was told to prepare for losing Lucas.

However, since he has been on the intravenous Soliris he has made remarkable progress. He has gone from bed-ridden to a near normal life.

Maciesza received his fifth treatment of the drug Wednesday and is now well enough to be at home and plan for his future, including a wedding to his long-time girlfriend.

“I was released from hospital and I continue to feel great,” Maciesza wrote in a statement to the province on Dec. 19, 2010.

“I am now convinced, beyond a doubt, that without continued access to Soliris I will die,” he wrote. “The infusions are every two weeks and if for any reason this treatment stops working, I will be the first one to stop it and save the taxpayers the cost — you have my word on it.”

Dr. Ian Chin-Yee, London’s chief of hematology and Maciesza’s doctor, wrote a letter to Matthews urging her to fund the treatment.

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Chin-Yee wrote the letter along with Dr. Vikas Gupta, a cancer doctor at Princess Margaret Hospital, Dr. Brian Leber, director of the molecular hematology laboratory at Hamilton Health Sciences and Dr. Richard Wells, an assistant professor at the University of Toronto.

“The clinical data to support Soliris is strong and, in our expert opinion, leaves no room for uncertainty as to the benefits to the patients,” said the letter, dated Dec. 8, 2010.

“However, on numerous occasions, both in the media and in the Legislature, you and members of your staff have inaccurately called this data into question,” the letter said.

With only 90 patients across Canada suffering from PNH there are few medical experts who treat the disease, Chin-Yee added.

“It is shameful as Ontarians and frustrating as clinicians that despite the robust body of clinical evidence, patients with PNH are being denied access,” the letter said.

“Your government is forcing patients to wait until their health has deteriorated to such a critical state that the treating hospital must scramble to find funding within their budgets to provide the first infusions of Soliris in an effort to save their lives.”

Progressive Conservative MPP Christine Elliott (Whitby-Oshawa) said it is “unconscionable” to keep Maciesza waiting for an answer.

“There really is no excuse for this delay,” she said in an interview. “I’d think there would be some understanding of that, at a higher level, and the need to expedite this at the approvals process.”

Where you live, who your doctor is or which hospital you are treated at should not make a difference concerning access to drugs, said New Democratic Party MPP France Gélinas (Nickel Belt).

“Decisions regarding access to drugs should be based on need,” she said. “Not on where you live or which hospital you go to.”

But the Connecticut-based drug maker of Soliris, Alexion, has a role to play here too, she added.

“The price they are charging is at the core of the issue,” she said. “If it wasn’t so prohibitively expensive we wouldn’t be having this conversation. They sell the drugs at the price the market will bear. To me, it is completely inappropriate. They have a responsibility to help as well.”

The drug company has previously told the Star the drug costs so much because developing medication for such a rare disease comes at a great cost to pharmaceutical firms.