Man with epilepsy fears drug shortage

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Barb Sweet
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Glen Cummings, who has epilepsy, concerned he may lose access to some of the drugs he takes for his condition. — Photo by Keith Gosse/The Telegram

 

Glen Cummings was diagnosed with epilepsy when he was nine years old, but his seizures took a turn for the worse several years ago.

He saw a neurologist in Halifax a couple of years ago and was placed on a round of drugs that has changed his life.

But the Kilbride man fears epilepsy drug shortages may strike here, erasing the drastically improved quality of life he now cherishes.

“I know where I was three to four years ago. Who’s to say with no warning (my drugs) will be gone? That is a big concern,” said Cummings, 47.

Shortages of anti-seizure drugs, mostly generics, have hit various areas in other provinces from time to time for the past few years.

Epilepsy Newfoundland and Labrador executive director Gail Dempsey, also president of the Canadian Epilepsy Alliance, said she hasn’t heard of any epilepsy patients here being unable to get their drugs due to shortages.

But she said there is anxiety among people that this province might be next.

“The anxiety is not unfounded when you’re reading and hearing it’s happening across Canada. There is reason to be concerned,” Dempsey said.

“What we tell people is to make sure you don’t wait until your meds run out to go and fill the prescription. … They could run into trouble if they went to the pharmacist at the last minute. It could be a horrendous mess.”

Switching medications for an epilepsy patient is tough and can take weeks or months, as the doctor has to use a step-down system in which the new drug is gradually increased, Dempsey explained.

Cummings said he worries about drugs becoming unvailable without warning.

 

Before he started taking his current medications, he said he was on a course of drugs that wiped out his energy and didn’t help the seizures.

“Before I went to Halifax, I was taking hard (seizures). I couldn’t care if I lived,” he said.

“I do still wake up in the morning with headaches, pain and (mild) seizures. I don’t come around until around 10 o’clock. That’s when my day starts.”

But that’s a big improvement over the devastating seizures he said he had prior to taking the new meds. He had a followup appointment in March and all was well.

Dempsey said epilepsy patients can sometimes feel like guinea pigs, because it takes a lot of effort to find the right medications and dosage, as their doctor tries to reduce seizures.

“It’s trial and error to get on the right medication,” she said.

There are no Canadian statistics, but it’s believed one to two per cent of the population suffers from epilepsy.

Drug shortages for various health conditions continue to be a major problem right across the country, said Sandra Carey, president of the Pharmacists’ Association of Newfoundland and Labrador (PANL).

The Canadian medical and pharmacists associations surveyed their members roughly a year ago, recognizing the impact of shortages.

For Newfoundland and Labrador, only seven physicians answered the survey, according to the Canadian Medical Association.

Jeff Morrison, director of government relations and public affairs for the Canadian Pharmacists Association, said the industry, suppliers and Health Canada have been working on the problem for months.

About a week ago, a short-term solution kicked into gear that sees the national brand name and generic drug associations posting alerts of drug shortages on websites in Saskatchewan and Quebec.

Through the posts, pharmacists, doctors and even patients can get a warning of what drugs are in short supply. But it doesn’t pinpoint where the shortages are geographically.

Morrison said the measure is not as robust as the association would like. Part of the problem is awareness, as going to a Saskatchewan website wouldn’t be obvious to information seekers in  other provinces.

As for a long-term monitoring program that also provides help to locate alternative drugs, the pharmacy association said Health Canada won’t fund it because it says it’s an industry problem.

The industry insists it shouldn’t have to carry the entire cost.

To find out about Canadian drug shortages, go to http://druginfo.usask.ca/healthcare_professional/canadian_drug_shortages.php

 

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Organizations: Canadian Epilepsy Alliance, Health Canada, Association of Newfoundland and Labrador PANL

Geographic location: Halifax, Newfoundland and Labrador, Canada Saskatchewan

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  • katrina murrin
    December 06, 2011 - 23:47

    Hi, my name is Trina and I have a little girl named Emma, she is 7 years old and has been having seizures since she was 10 months old. Emma would have seizures that would last for hours and she would stop breathing on alot of them too. We have almost lost her on three occasions when she has gone into a seizure and could not come out of it, the doctors worked on her for a very long time and they brought her back each time thank god.Emmas has had to be put into a coma and had to be parrilized in order to get the breathing tube down her throat to help her breath because she was gone into a seizure that she was not coming out of, finally the next day she came out of that one but it took her a long time to get back to her fun loving little self. These seizure went on right up until february 2011. Emma is on a drug called Depucaine and it has been the only one that has help her seizures get under control, so if this is one of the drugs that is going to be a shortage of I don't know what will happen to Emma cause she has been on almost every drug out there and nothing has worked. Thank you Katrina Murrin mother of Emma Murrin