Download Epilepsy Action Day at Queen*s Park

Epilepsy Action Day
at Queen’s Park
September 24, 2013
Who we are
Educate
Engage
Empower
Dedicated to promoting independence and optimal quality of life for children
and adults living with seizure disorders, by promoting information, awareness,
support services, advocacy, education and research
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Local Epilepsy Agencies Throughout Ontario
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18
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12 687 5
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17
13 15 16
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Epilepsy Area Offices
1. Peterborough and Area
2. Simcoe County
3. Kingston and Area
4. Ottawa-Carleton
5. Durham Region
6. Halton Peel Hamilton
7. Toronto
8. York Region
9. North Bay
10. Sault Ste. Marie and Algoma District
11. Timmins
12. Huron-Perth-Bruce-Grey
13. London and Area
14. Windsor and Area
15. Grand Erie
16. Niagara
17. Waterloo/Wellington
18. Thunder Bay – in development
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Who we are
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The 18 epilepsy agencies in Ontario represent 65,000 people living
with epilepsy and their families through a variety of supports and
services including (but not limited to):
 Support and information via phone, online and walk-ins
 Brochures in doctor offices
 School advocacy/education
 Referrals to other community supports (community
connectors)
 Public education displays / newsletters/ social media
 Employer advocacy
 Seizure First Aid training
 Support groups/peer support/counselling/social
(psychosocial)
Contributions of nearly 2,000 volunteers
Agencies are funded through fundraised dollars including events,
individual and corporate donations and grants
No direct operational government funding is received
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What is Epilepsy?
What is Epilepsy?
• A common brain disorder that is characterized
by recurrent seizures
• Epilepsy has no age, racial, geographic or
socio-economic boundaries.
What is a Seizure?
– A brief disruption in normal brain activity that interferes with
brain function
– Type of seizure depends on which area of the brain is involved
– People may experience an alteration in behaviour, consciousness,
movement, perception and/or sensation
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Treatment
There is no cure…
• Up to 70% of people with epilepsy respond to drug treatment
• 30% of people with epilepsy still experience uncontrolled seizures
Anti-seizure Drugs
Surgery
• Main treatment for epilepsy
• For optimum seizure
control, may be prescribed
alone or in combination
• Seizures are eliminated in
only about 60% of cases
with the use of one drug
• Approximately 20% of patients
are potential candidates but
only 2% undergo surgery
despite the fact that up to 80%
of appropriately selected
candidates can achieve seizure
freedom with epilepsy surgery
Other Treatments
• Medical Diet Therapies
• Vagal Nerve Stimulation (VNS)
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The Impact of Epilepsy…
• Affecting approximately 65,000 in Ontario*
– 10,000 children
– 55,000 adults
• Approximately 6,500 new diagnosis each year*
• Burden of Epilepsy
– Social stigma
– Psychiatric co-morbidity
– Poor school performance, peer
relationships
– Higher unemployment
– Loss of driver’s licence
– Marriage and family less likely
– Lower educational status
– Higher mortality
1 in 100
Canadians have epilepsy
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*OHTAC Recommendation: Care for Drug-Refractory Epilepsy in Ontario, July 2012
Key Issue: The Social Burden of Epilepsy
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The social and psychological burden of
epilepsy is greater than the medical
burden
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1,342,857 disability days are associated
with epilepsy every year in Ontario*
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The productivity loss has been estimated
at $139.23 million for the population
living with epilepsy in Ontario*
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According to an Ontario Health Survey,
those living with epilepsy accessed
psychology or social work services 3 times
more then the general population
*OHTAC Recommendation: Care for Drug-Refractory Epilepsy
in Ontario, July 2012 (Data was calculated based on 1990-91
population and annual income)
Direct
Medical
Costs 12.5%
Indirect Social
costs 87.5%
The Burden of Neurological Diseases, Disorders and
Injuries in Canada, 2007
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Recommendation: The Social Burden of Epilepsy
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Thank you for the work completed to date on the Ontario Epilepsy Strategy
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Our role is to help people in Ontario living with epilepsy once they leave their
doctors office
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We want people to lead quality lives. People with epilepsy should be
supported to have the highest quality of life possible.
Patient education and self-management will
reduce the cost to the province. Please advocate
to your LHIN for funding for community-based
epilepsy education
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Key Issue: Education
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Canadians with neurological conditions (like
epilepsy) state that patient education needs to
become a government priority
*Dr. Jaglal, University of Toronto, 2013
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36% of visits to London, Ontario emergency rooms
due to seizures are potentially deferrable if
persons with epilepsy are taught seizure first aid*
Brain Matters Curriculum
• Currently in 6
school boards
Thinking about Epilepsy
• Currently in 11
school boards
*American Epilepsy Society Meeting Abstracts , 2007
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Teaching students what they can do to help an
individual living with seizures in the school
community ensures it is a safe environment for
youth with epilepsy to learn and grow
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Engaging students and teachers in seizure first aid
is critical to ensure they know how to respond
appropriately to a person having a seizure
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Recommendation: Education
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Please advocate for epilepsy awareness curriculum and programs including:
– Brain Matters program in Grade 12 Biology classrooms across the province
– Thinking about Epilepsy in Grade 5 classrooms across the province
Establish an inter-ministry panel to improve policy development and
communication between related ministries as world leading brain research
continues in Ontario:
Ministry of Children and Youth Services
Ministry of Research and Innovation
Ministry of Health and Long Term Care
Ministry of Education
Ministry of Community and Social Services
Please advocate to the
Minister of Education to
expand Epilepsy
curriculum in schools
across Ontario
Ministry of Transportation
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Key Issue:
Drug Shortages & Access to New Treatments
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The impact on patients is serious, and in some cases life-threatening.
Drug shortages cause longer wait times for patients in regular visits and procedures
due to the time wasted and duplication of effort among healthcare professions in
sourcing medications or finding alternatives
Specific patient impacts include:
94% of pharmacists had difficulty
– Compromising or delaying medical procedures
sourcing a medication in their last
– Forcing patients off safe, effective treatments
week at work*
– Long-term negative implications for patient
health, including loss of seizure control
*CPhA survey, 2013
– Loss of drivers licenses and loss of independence
– Putting lives at risk through increased
66% of
medication errors
physicians felt
– Employment difficulties
drug shortages
– Placing patients and families under huge
are worse since
mental stress
2010*
– Greater risk of injury, accidents,
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hospitalization or death
*CMA survey, 2013
Recommendation:
Drug Shortages & Access to New Treatments
The Ontario Ministry of Health must put patients
first by working with the federal government to find
a solution to the serious and growing issue of drug
shortages.
Patients Need:
• a focused effort to understand the root causes;
• further transparency through a mandatory
reporting system and a clarity of roles;
• solutions that target both prevention and
management of drug shortages including access
to new treatments
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Recommendation: Inter-ministry panel
Establish an inter-ministry panel to improve policy development
and communication between related ministries as world leading
brain research continues in Ontario
Ministry of Children and Youth Services
Ministry of Research and Innovation
Ministry of Health and Long Term Care
Ministry of Education
Ministry of Community and Social Services
Ministry of Transportation
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What Can You Do?
People living with Epilepsy still need your continued help and action.
Please help us advocate for the following:
Funding for
community-based
epilepsy education
• Your Local Health
Integration Network
• Hon. Deb Matthews
• Hon. Teresa Piruzza
• Hon. Ted McMeekin
Expanded epilepsy
awareness curriculum
programs
• Hon. Liz Sandals
• Hon. Teresa Piruzza
Work to find a solution
to the serious problem
of drug shortages
• Hon. Deb Matthews
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Thank you!
For more information, please contact:
Rozalyn Werner-Arcé, CAE
Executive Director
Epilepsy Ontario
905-474-9696
[email protected]
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