There are eight patients in Ontario waiting to gain access to a $500,000 a year drug therapy to treat an extremely rare blood disorder, the Star has learned.

While Health Canada has approved the use of the drug, the Ontario government does not cover the costs of Soliris, the only medication available that can control a disease that causes the body to attack its red blood cells.

As first reported in the Saturday Star, Lucas Maciesza, 26, is lying in a Guelph-area hospital dying from Paroxysmal Nocturnal Haemoglobinuria and desperately needs access to Soliris, an intravenous medication.

However, in an odd twist, the province has agreed to pay for the drug for Norma Metz, a North Bay woman with the same disorder.

Some Ontario patients with catastrophic drug costs get their medication paid for by their local hospital. If the hospital has the extra money, they can afford to buy the drug. The North Bay hospital first paid for Metz’s treatment. The province took it over on compassionate grounds — once you begin the drug therapy you can’t stop.

The same hasn’t happened for Maciesza.

Health Minister Deb Matthews, in a statement to the Star, said her “heart goes out” to the Maciesza family.

“I have asked the ministry to ensure we are considering the family’s request as quickly as possible,” she said. “Ontario relies on the advice of medical experts when making decisions on the drugs the province funds.”

Progressive Conservative MPP Ted Arnott (Wellington-Halton Hills) called Matthews office Friday and asked her to intervene.

“This should be fixed,” Arnott said in an interview Sunday. “I’m not trying to be political about it. I feel strongly the minister must intervene to expedite the review of the medication. This is what medicare is all about.”

The inequitable access to drugs in Ontario — and across Canada — has got to stop, patients and doctors say.

Ontario has saved nearly $1 billion since the start of a bold drug reform agenda four years ago. Those reforms include the bulk purchasing of medication and eliminating professional allowances to pharmacies.

The savings have paid for new drugs to be added to the Ontario Drug Benefit Program but those suffering from rare, or what is called orphaned, diseases feel their needs are being overlooked.

“Time is of the essence for Lucas,” said Barry Katsof, head of the Canadian Association of PNH patients — they know of eight patients in Ontario in need of the treatment. PNH is extremely rare and only affects 90 Canadians.

The association received a $15,000 grant from the U.S. pharmaceutical firm Alexion, the makers of Solaris, six months ago.

Lucas will be transferred to London Health Sciences Centre on Monday, said his father Rick Maciesza.

At that time they’ll have to make a decision on if they can afford to pay for the drug as they are running out of time.

Once on Soliris, he’ll be on the $500,000 annual treatment for life.

Lucas was admitted to a community hospital in Fergus last weekend with a large blood clot coming out of his liver. His kidneys are also shutting down.

“We have to make a decision when we get to London,” Rick said. “He is incredibly uncomfortable and in pain. They are doing everything they can to try and drain and flush his kidneys.”

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Rick Maciesza said he did get a call over the weekend from Environment Minister John Wilkinson, Maciesza’s MPP, who said the Ministry of Health needs to approve the drug before they can try and get it paid for on compassionate grounds.

“It is really a shame. I’d like to know how much we are spending being reactive and not proactive,” Maciesza said. “I feel like we are being discriminated against. They cover everything and why not this?”

It doesn’t make sense for the Ontario health ministry to study a drug that was approved federally two years ago, he added.

“If something happens to my boy in the next little while, well, they better be ready. So many people will be outraged,” he said.

“My son said to me today — I feel like I am in the water drowning and the government is in a boat with a life preserver and they won’t throw it to me.”

The family has been all over the world — to Mexican cancer clinics and to European specialists — in a bid to find a cure for Lucas.

If Lucas can’t get Soliris the only other possible treatment is a bone marrow transplant.

“How many hundreds of thousands of dollars will that cost?” Maciesza asked.

Katsof has been on Soliris for two years, courtesy of the Quebec government, which funds the treatment.

He said it has vastly improved his life. He no longer needs regular blood transfusions and he feels like he has returned to his pre-disease healthy self.

“Soliris is like putting a band aid over the red blood cells — that is why the effect is so immediate,” he said.

“This kid Lucas is hanging on by his fingernails,” Katsof said. “The government is playing with peoples lives.”