BT Calgary Blogs

Another story about uniform access to medication. It’s a big issue… particularly for certain patients with chronic kidney disease on dialysis.

Here’s the story.

Marshall Thorowsky still has trouble getting around. That’s because he suffered a terrible complication from his kidney disease that almost cost him his leg.

“Lots of extreme pain, wouldn’t sleep at night time, it’s devastating,” says Thorowsky. His wife Carroll adds, “he was saying just give me something and I’ll cut that leg off because I can’t stand the pain anymore.”

Here’s what happened. Kidney patients on dialysis are not able to get phosphate out of their bodies. Doctor Nairne Scott-Douglas explains, “your phosphate goes up it will suck calcium out of your bones and weaken your bones.”

But the catch is calcium is given to dialysis patients so it will bind to the phosphate – so patients can excrete it.
But for some, that calcium builds up and causes problems in the body. And this is exactly what happened in Thorowsky’s leg.

His wife says, “there’d been some large amount of calcium depositing right into the vessels and veins in his leg and it was cutting off the blood supply.”

So it looked like Thorowsky had flesh eating disease on his leg. But then doctors told him about Renagel.

“It is a non calcium based phosphate binder – it binds up phosphate in your food without delivering calcium to your body,” says Dr. Scott-Douglas.

So it puts the phospate and calcium in patients like Thorowsky back in balance. But Renagel is not covered by Alberta Health – even though it’s available everywhere else in the country.

“Why would every province in Canada approve the use of this drug in certain clinical situations except Alberta, the only answer you can come to on that is we’re not willing to pay for it,” says Dr. Scott-Douglas with some frustration.

But Thorowsky got free access to Rengael by appealing to Genzyme – the pharmaceutical company that makes it. He’s still on it and his leg has healed.

“I know I needed it, and it certainly made a 
difference in my life,” he says.

Which is why the Thorowskys are speaking out. They, and Doctor Scott-Douglas feel there should be uniform access to the medication.

“We need to have control of pharmaceutical costs, I’m not against that,” says Scott-Douglas, “what I’m against is having an unequal playing field between Canadians.”
 
Carroll Thorowsky says, “we would certainly expect Albertans be provided with or have access to this type of therapy.”