I’d never heard of kidney cancer before this story was pitched to me. Now I realize it’s rare, but 4600 patients a year in Canada are still diagnosed. It’s also a tricky disease because symptoms don’t show up until it’s often too late. But the patient in this story was very lucky, which is why she’s speaking out – to raise awareness about the disease, and tell people that not all treatment options for kidney cancer are available in Alberta.
Here’s the story.
Barb Morin was diagnosed with kidney cancer last september, on her birthday.
“As soon as they say cancer you always expect the worst. You don’t think this will be cured tomorrow.”
But Morin was lucky. Her cancer was caught early, by chance – a catscan for her bad back picked up the mass. And in that case, patients can have the kidney or mass removed. Most patients however are not as fortunate, says medical oncologist Doctor Dean Ruether, because kidney cancer does not produce symptoms until it’s often too late.
“Masses arise in the kidney, the kidneys sit in the back of the abdomen, there’s lots of space back there, so these masses have to get fairly large before they produce symptoms.”
And even then, the symptoms are non-specific. Mild back pain, fatigue, some weight loss or blood in the urine. But by that point, Doctor Ruether says the cancer has likely spread. This makes it a difficult disease to treat.
In the past 5 or 6 years, several new treatment options have become available for people with kidney cancer, however one of them is still not available in Alberta. It’s called Torisel. Currently, it’s only available in British Columbia and Nova Scotia.
Dr. Ruether says, “certainly I’ve seen in the last year a handful of patients who I would like to have been able to offer this kind of treatment to, the issues around access are a problem because these drugs are very expensive.”
This is one of the reasons Morin is speaking out. Even though, she didn’t need this drug, she believes kidney cancer patients should have uniform access to all medications.
“I’m well enough to do this, maybe some of these people can’t,” And she knows how fortunate she is, to have survived this disease.
“I had an angel over my shoulder the whole time, I was really lucky.”
— Now, to be clear, patients who need the drug and can’t get it, can often get access to the medication by entering a clinical trial, or through a compassionate access program with the drug company. That said, this is still a story about uniform access to medication. How do we decide which drugs should be covered??? Tough question to answer.
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