October 23 is SUDEP Awareness Day.

SUDEP stands for SUDDEN UNEXPECTED DEATH IN EPILEPSY. SUDEP is linked to seizures. Better control is the best way to reduce your risk.

Use the hashtag #IAmSUDEPAware on Twitter to help raise awareness and to also raise funds for SUDEP Awareness and SUDEP Research!

Visit SUDEPAware.org for more information including a series of brochures about SUDEP for individuals with epilepsy, their families and healthcare providers.

By Deron Hamel

If 24-year-old Julian Cole doesn’t have supplies of Apo-Divalproex and Apo-Levetiracetam to manage his epilepsy, his mother fears he will have nonstop seizures and could even die.

Both medications are generic anti-seizure drugs manufactured by Apotex, both are in shortage, and there is nothing Julian’s mother, Dot Cole, won’t do to secure supplies for her son.

But the Coles’ options are running out.

The shortage of Apo-Divalproex, a generic form of Epival, has been posted on Drugshortages.ca since June. Apo-Levetiracetam, a generic form of Keppra, has been listed since November.

While Julian, who is also living with autism, has a supply of Apo-Divalproex to carry him through the next two weeks, the dates when the shortages are scheduled to end keep changing. The uncertainty has added to the Coles’ stress.

The Apo-Divalproex shortage – which is affecting all tablet strengths – was expected to end April 30. On April 21, Apotex revised the estimated resupply dates. The 500-milligram tablets, which Julian takes, will be available first. The resupply date is now May 9, although some inventory of the 500-milligram tablets is being shipped to wholesalers today (April 22), according to information on Drugshortages.ca.

But Dot is concerned the restock date of this drug could be pushed back again. This is taking a severe emotional toll, she says.

“Terrifying – that would be my first word to describe what we’re going through,” Dot tells Voices of Epilepsy. “I’m looking at Julian, and I’m thinking, ‘I may not have him in a month because of this medication shortage.’ It’s overwhelming.”

Dot has been relentless in her efforts to obtain supplies of these medications for her son. She has placed thousands of calls from her home in Whitby across North America and the world. Dot has also reached out to friends across Canada who are trying to help Julian obtain a supply of the medications. She has told her story in newspapers and on TV to underscore how precarious Julian’s situation is.

So far, she has found small amounts, a bottle here and there, but has had no luck obtaining more medications to supplement their dwindling supply.

A major part of the problem with shortages, Dot says, is that pharmaceutical companies are not transparent about when they are going to happen.

“I’m sure they know when these shortages are going to happen,” she says. “They need to notify everybody three months ahead to say they are running into problems and that there are going to be shortages. People need to be prepared for when this happens.”

Dot would also like to see the Canadian government step in and mandate pharmaceutical companies to have supplies of lifesaving medications kept in storage to help people when shortages happen.

“Shortages have averaged about six months, so the government needs to tell them that they always need to have a six-month supply on hand,” she says.

Julian can only take medications manufactured by Apotex – even antibiotics. If he takes medications manufactured by other drug companies they cause seizures.

While all manufacturers put the same active ingredients into their medications, the non-medicinal ingredients that bind the medications are different.

“Generic and brand-name drugs are categorized as interchangeable,” says Suzanne Nurse, director of client services with Epilepsy Ontario.

“The generic formulations have to fall within very strict parameters in comparison to the brand in order to be approved by Health Canada. It appears that many people can safely switch between different products.”

Nurse notes that some people with epilepsy experience differences in seizure control or side-effects when switching from one manufacturer’s product to another. Epilepsy Ontario has other clients, like Julian, who have had life-threatening events when switching to an interchangeable product, she adds.

“When it comes to anti-seizure medications, a safe, consistent and reliable supply is a necessity,” Nurse says. “People’s lives depend on it.”

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.