New drug shortage rules don't go far enough, says B.C. mother

A mother who has struggled to access medication for her son says new federal rules about drug shortages don't go far enough.

Health Minister Rona Ambrose announced on Tuesday that the government will make it mandatory for pharmaceutical companies to report drug shortages.

Christine Sorensen son's seizure medication became suddenly unavailable when the company decided to stop manufacturing in Canada. She says more needs to be done to protect patients who rely on life-saving medication.

"I think a drug company has an ethical responsibility, once they start producing a drug and people rely on it," said Sorensen, "to continue to produce that drug."

She would like to see more rules around the discontinuation of medication.

"I think it's a good first step," said Sorensen of the new federal rules. "I don't think it answers all of the issues around supply for patients with drugs that are rarely used."

Sorensen's son, Derek, had his first seizure when he was 2 years old. At his worst, he had over a 100 seizures a day.

There were times when his condition got so bad that he had to be airlifted from their home in Kamloops, B.C. to the B.C. Children's Hospital in Vancouver.

For years, doctors tried to find effective treatment.

"It was very difficult. We played around with probably every licensed drug available to treat epilepsy," said Sorensen.

After three-and-a-half years of searching for the right medication, the doctors told Sorensen they had done all they could.

Drug shortage

"We were told to take him home and to enjoy what life we had left with him," she said.

Derek was being weaned off a cocktail of medications when his seizures began to decrease. That's when his medical team realized he was responding to Zarontin when it was administered to him by itself, and not in a combination of other drugs. 

Eventually his seizures stopped entirely  — as long as he stayed on Zarontin. 

But one day when Sorensen went to pick up Derek's regular three-month supply of medication, the pharmacist told her it would no longer be manufactured in Canada.

"That was a really horrible day," she said.

To acquire the drug, Sorensen had to travel to the U.S., where it was still available.

Sorensen lobbied the drug company until her son's medication was made available in Canada 18 months later.

Her son Derek is now 16 years old.