Daryl Yeo discovered there was a clobazam shortage after receiving an e-newsletter from Epilepsy Ontario Jan. 4 announcing a warning to those needing the seizure control drug. For Daryl, the president of Epilepsy Toronto and father of a woman with epilepsy who takes clobazam, this is a sign that things need to change.
Upon learning of the medication shortage, Daryl called his 33-year-old daughter, Lindsay, to let her know she needed to contact her pharmacy to get more information about the shortage. It turned out the pharmacy was out of stock.
While Lindsay eventually obtained the medication from another pharmacy, Daryl says it was only because of Epilepsy Ontario’s e-mail alert that she found out in time.
“If I hadn’t got the notice from Epilepsy Ontario giving us the heads-up, Lindsay wouldn’t have found out until probably a couple of days ago,” says Daryl, adding that if people needing a medication only find out about shortages when they go to refill their prescription it can be too late.
This incident, says Daryl, underscores the need for pharmaceutical companies to announce warnings of drug shortages before they happen — and a push from government to communicate to the public whenever drug shortages occur to ensure people can make necessary arrangements, should their medication become unavailable.
Daryl says many people in the epilepsy community share this opinion. What’s needed, he says, is a unified voice to make things happen — and not just from the epilepsy community.
Drug shortages can affect anyone undergoing medication therapy for any number of medical conditions. Daryl says the best possible way to address the need for a national warning system would be for epilepsy agencies to collaborate with other advocacy groups, such as cancer, heart and stroke and mental health agencies, to create a unified voice.
“(We need) to speak with one loud voice where people . . . can inundate their MPs, ministers and the prime minister with e-mails saying that in a country like Canada, there’s no reason why we can’t have a more effective system and here’s (what can be done),” says Daryl.
Giving people ample notice of medication shortages would maximize the time needed for people to refill prescriptions or work with their doctor to develop alternative medication plans, says Daryl.
Additionally, there’s a safety benefit to having a warning system in place, he says.
“Clobazam, for instance, you can’t just quit cold turkey, you need to wean yourself off, and if you’re going to move to an alternative drug you need to do that over a period of time,” Daryl says.
Although there is a national website — drugshortages.ca — where pharmaceutical companies post medication shortage advisories, it’s a voluntary system. Daryl says posting advisories needs to become mandatory and that push needs to come from government.
“(That system) is not working, in my mind. When I got the notice through Epilepsy Ontario, I went onto the site (and there was) no reference to clobazam whatsoever,” says Daryl.
In addition to an improved notification system, there needs to be an effective response plan in place to minimize or prevent anticipated shortages, says epilepsy information specialist Suzanne Nurse.
This, Nurse says, should include an early notification to patients and their health-care providers when drug shortages cannot be avoided.
“The other essential component we need is for government and industry to work together on potential solutions if a drug shortage is anticipated,” she says.
“Ideally, this would prevent a potential supply disruption from evolving into an actual drug shortage at community and hospital pharmacies.”
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Writer: Deron Hamel