Epilepsy drug shortage

By Lyndi-Colleen Morgan

According to Epilepsy Ontario, 42 people are diagnosed with epilepsy daily. Epilepsy is treatable  with prescription drug use but due to the shortage of epileptic drugs, people are not receiving treatment.

Since 2010, approximately 15-23 drugs used to treat Epilepsy have had supply disruptions. This has resulted in some people being left without forms of treatment for long periods of time.

Epilepsy is a brain disorder caused by recurring seizures and can be treated with medication, non-drug treatments and surgery. Epilepsy Ontario says one of three individuals will seek other forms of treatment because their bodies do not respond to the medication. Two out of three will achieve good control of their epilepsy with medication but the shortages have put some at risk.

According to the  Canadian Drug Shortages Database major drugs in Canada are in facing shortages, including Levetiracetam, Pregabalin and Lamotrigine are listed as having supply shortages.

Suzanne Nurse, director of information and client services for Epilepsy Ontario, said the majority of the drugs listed are not in major risks of depletion. Although there are cases of drugs where the shortages are severe and there has been no sign of it stopping. This includes Epival and its generic brands which have experienced the highest level of shortages.

Nurse said variations of Clobazam products are examples of drugs at risk of shortages that could escalate quickly.

“For example, Apo-Clobazam is in shortage and there are only two other formulations marketed in Canada, Teva-Clobazam and Frisium,” said Nurse. “ Since there are only three products marketed and one is in shortage, this could result in a serious problem as the other two products become depleted quickly.”

The depletion of certain products can cause difficulties for individuals using them, said Nurse. Some shortages will result in patients having to switch medications. This switching can be difficult and the transition to a new anti-epileptic drug can result in a number of side effects, including increased seizures.

Judy Cartwright, 39, was diagnosed with epilepsy several years ago, after having a seizure while waxing her friends eyebrows. After diagnosis, she was placed on three medications to help stop the seizures, but she said they have not stopped completely but they are under control.

Cartwright said although the medication does not stop the seizures, she knows taking the medication helps because she can feel a change when she forgets to take them. She also said she could not imagine what it would be for those who could not have theirs for an extended amount of time or who have to switch due to shortages.

“It’s very scary, I know that even if  I miss one dose I feel it and things are different…I can’t imagine if those (medications) weren’t available,” said Cartwright. “I definitely think my quality of life would change. I would have no control over the seizures and there would be adverse effects.”

She said she is thankful she has not experienced a shortage herself and that she knows there are support networks in her community that are available to help her when needed.

The Windsor-Essex Epilepsy Support Centre, is one of the groups available to the community to help those living with epilepsy.

Bailey Scott is the director of outreach and events for the ESC and said this organization is available to offer the support those living with epilepsy might need. Including education, support groups, one on one and where they can receive medical assistance.

“We try to help all of our clients in the best way we can. We give them guidance in terms of directions they can take, but we can’t give them medical advice,” said Scott. “We recommend that patients seek assistance from their doctor or pharmacist first if they are experiencing a shortage.”

She said people should not switch, ration or stop using medication without consulting a medical professional.

Nurse said when the shortages began the Canadian government and epilepsy organizations began working together to start toolkits for drug companies, doctors, pharmacies and epilepsy support groups to combat the shortages. She said the next step is to provide support for those directly affected and to pinpoint a permanent solution to the problem.