Having a strong client-pharmacist relationship can make a difference to a person living with a seizure disorder in times of a medication shortage, and for people like Kayleigh Boyd, who is affected by seizures as a result of having Rett syndrome, the client-pharmacist relationship can be even more crucial, says her mother, Terry.
Rett syndrome is a complex disorder affecting females almost exclusively. Children begin life with normal development and then have a regression and loss of speech and motor skills. Epilepsy is a common feature of Rett syndrome. Seizure management is one of the most challenging aspects of this complex disorder that can also include mobility loss, breathing problems, as well as speech and cognitive impairments.
For a person living with Rett syndrome who is affected by seizures, shortages of a medication like clobazam can lead to a life-threatening situation.
Fortunately, due to her strong client-pharmacist relationship, Terry, who is also president of the Ontario Rett Syndrome Association, was able to have Kayleigh’s pharmacist secure a six-month supply of clobazam after Epilepsy Ontario informed her of the shortage in early January.
The only reason the medication was secured was because the pharmacist made the effort to go to a secondary supplier to obtain clobazam after the primary supplier was found to be out of stock, says Terry.
But not everyone can expect to have the same outcome, says Terry. Because it may not be cost-effective, many pharmacists will not go to a secondary supplier to obtain medication during a shortage, she adds.
“And this is going to be an issue for many families: to find a pharmacist who is willing to be paying for an extra supply and then wait for payment to come from the government,” Terry explains.
In the case of people with serious, complex conditions, having a strong client-pharmacist relationship can help the pharmacist better understand the severity of a situation — and likely encourage them to go the extra mile for the client.
Many in the epilepsy community are stressing the need for legislation making it mandatory for pharmaceutical companies to issue warnings whenever there is an impending drug shortage.
Epilepsy information specialist Suzanne Nurse notes how a clobazam shortage can be especially precarious for people living with complex disorders like Rett syndrome.
“I have heard from people with complex and drug-refractory epilepsy disorders who have had negative consequences in the past when they were switched from clobazam made from one pharmaceutical company to a formulation of clobazam from another company, such as increased seizures, changes in mood and a worsening of their condition,” explains Nurse.
“Not having the drug at all is something that people don’t even want to think about, and pray that they will not have to face. Indications this week are that the clobazam shortage is easing, which is a tremendous relief to everyone who relies on this drug.”
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Writer: Deron Hamel