Engaging MPPs at Queen’s Park on Purple Day is paying off for Epilepsy Ontario, as evidenced by feedback the organization is getting from government officials.
Epilepsy Ontario representatives were at Queen’s Park on Purple Day (March 26) to raise awareness among MPPs about the issues people with epilepsy and their families are facing.
“We heard that epilepsy has a much higher profile at Queen’s Park,” says Epilepsy Ontario executive director Rozalyn Werner-Arcé. “MPPs and bureaucrats are hearing about it, talking about it and remembering it. This is good feedback and a reinforcement that we need to keep doing what we are doing.
“Between Epilepsy Action Day at Queen’s Park in the fall and March 26, as well as ongoing communications both at the local level and provincially, our combined efforts are paying off.”
Meetings between government officials and Werner-Arcé and epilepsy information specialist Suzanne Nurse covered a myriad of topics. These include the need for legislation to allow teachers and staff members to administer rescue medications in school to children who may need them. The issue of how to deal with drug shortages to ensure the safety of people needing medications is never compromised was also a major topic.
Werner-Arcé and Nurse spoke about the current shortage of clobazam, an anti-seizure medication which has been in short supply for several weeks and is not anticipated to make a full return to Canadian pharmacies until May 8.
Werner-Arcé and Nurse also spoke to the Epilepsy Implementation Task Force and the opportunity to further engage community support organizations as a partner in the broader care cycle.
Werner-Arcé is also encouraging people with epilepsy and their families to reach out to their MPPs to invite them to special events and engage them through their organizations’ newsletters.
“It’s important to have those relationships and keep the dialogue going,” she says.
In the morning legislature session, MPPs Helena Jaczek and France Gélinas stated that there was all-party unanimous consent to permit MPPs to wear purple ribbons in recognition of Purple Day. In the afternoon, there were member statements about Purple Day by Bas Balkissoon from the Liberals and Christine Elliott from the Progressive Conservatives.
In her presentation, Elliot, Whitby-Oshawa MPP, took time to recognize Epilepsy Durham Region executive director Dianne McKenzie.
Purple Day was started in 2008 by Cassidy Megan, a nine-year-old Nova Scotia girl who is living with epilepsy. Purple Day events are now held worldwide.
Capping off Epilepsy Awareness Month, Health Minister Deb Matthews announced March 28 that the province is funding 21 new hospital beds for patients with epilepsy, more than doubling the number of existing hospital beds for patients with epilepsy in the province. There are currently 17 hospital beds funded for patients with epilepsy in Ontario.
The $8.7 million investment will help 750 people with epilepsy get quicker testing for drug-resistant epilepsy, the government says.
Writer: Deron Hamel
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