End the Epilepsy Crisis in British Columbia
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For many people living with epilepsy, it is the devastating emotional, social and psychological stresses of epilepsy – not just the challenges of seizure control – that often leave the deepest scars. This can lead to a number of negative factors for people living with epilepsy, including social isolation, depression, suicide, family breakdown, job loss and living in poverty, among many others. In fact, despite being one of the most common neurological conditions, epilepsy currently receives the least funding and research dollars and has the least recognition, education and awareness in society. This can lead to increased stigma towards people living with epilepsy, which has a severe, negative and debilitating impact on their mental health and well-being and overall quality of life.
People living with epilepsy in BC are at a further disadvantage. Within the healthcare system in BC, there are many inequities associated with the care and support provided to people living with epilepsy, especially when compared with other provinces in Canada.
On behalf of the BC Epilepsy Society and the over 40,000 people living with epilepsy in BC, Kim Davidson – CEO & Executive Director of the BC Epilepsy Society and Founder of the international I AM A VOICE for Epilepsy Awareness™ campaign – has reached out to provincial Health Minister Adrian Dix 6 times in the last 18 months with no response and to Premier John Horgan 3 times in the last 18 months with only one response months later stating, "Regrettably, we are unable to schedule a meeting for the Premier due to a high volume of requests." This has led to the necessity to raise awareness of the fact that BC is a "have not province" due to a lack of infrastructure and systemic breakdowns, causing the already compromised people living with epilepsy in BC to become the casualties of a homegrown crisis, leading to the below disparities:
14,000 People in BC have Drug-Resistant Epilepsy:
35% of people living with epilepsy in BC (14,000 people) have drug resistant epilepsy
Less than half of these people are considered to be appropriate candidates for epilepsy surgery
The remaining 7,000+ people are suitable for alternative therapies, such as the Ketogenic Diet, Cannabidiol (CBD), Vagus Nerve Stimulation (VNS) Surgery, etc.
The procedure for implanting the VNS takes one-hour and is a relatively simple procedure that health care professionals in BC already have expertise in
However, funding is currently being capped to limit the number of implants
There are thousands who could benefit from this procedure in BC, yet, in 2019, only 16 people had the life-changing procedure
Approximately 3,200 people in BC are newly diagnosed with epilepsy every year
Beds in Seizure Investigation Units for Epilepsy Diagnostics:
BC has 2 epilepsy beds with a population of 4.8 million
Alberta has 8 epilepsy beds with a population of 4.3 million
Manitoba has 2 epilepsy beds with a population of 1.4 million
Brain Surgeries in the Adult Population Frequently Being Sent Out-of-Province:
3 out of every 4 people living with epilepsy in BC are being sent out of province to Alberta and Ontario for epilepsy brain surgery
There is also a very long waitlist for brain surgeries occurring both in and out of province
Neuropsychology and Neuropsychiatry:
In 2016 and 2017, the BC Epilepsy Society funded the annual salary of one neuropsychologist attached to the epilepsy clinic in BC
This expenditure was an unsustainable financial burden to the BC Epilepsy Society
This financial burden should not have fallen on the BC Epilepsy Society, a non-profit charitable organization, but should have been the purview of the BC Ministry of Health
In 2019, the BC Ministry of Health cut funding for BC’s one and only neuropsychiatrist attached to the epilepsy clinic:
All other Canadian Health Ministries have funded several neuropsychologists and neuropsychiatrists at their epilepsy clinics
Pharma, Drugs and Medications:
BC is the only province that is not approved for Brivlera, a medication that is used in the treatment of refractory (treatment-resistant) focal epilepsy
People living with epilepsy in BC must pay out-of-pocket to use the medication, creating immense financial burdens and causing some people living with epilepsy in BC who need the medication to move to Alberta, where it is covered
System Navigators for People living with Epilepsy and their Families:
BC does not have a single system navigator for people living with epilepsy to aid youth aging out of the child system into the adult system; to aid those with new diagnoses of epilepsy; to aid people with refractory (treatment-resistant) epilepsy; or to aid people in any other situations requiring support
All other Canadian provincial governments have funded several system navigators for people living with epilepsy
Clinical Guidelines for the Management of Epilepsy:
Ontario has the “Ontario Clinical Guidelines for the Management of Epilepsy”, which provides information on supports in the health care and social services system for people living with epilepsy
No such guidelines exist in BC
Kim Davidson stated "After being told I needed to get in line for funding, I began to review the Gaming Grant provisions by the BC provincial government. I came to find that, in 2020, $2,628,230 of gaming dollars was awarded to recreational sports for healthy, able-bodied adults while only $136,000 was awarded to epilepsy."
She added, "I believe that there needs to be some equity within the BC provincial government when it comes to funding this disease as it funds other diseases, such as Multiple Sclerosis, Muscular Dystrophy and Cerebral Palsy. However, I want to be clear that I am not suggesting that the BC provincial government should take away funding from them as they need these funds to support people living with those diseases. I am strongly advocating that Epilepsy goes to the front of line, ahead of adult recreational sports ... people are not dying from paying for sport. The body bags are piling up and this government needs to do better when it knows better. There are over 40,000 people living with epilepsy in BC and approximately another 200,000 family members impacted by this disease. I am raising the alarm about the crisis and this is a call to action. Please sign our petition."
Please see the information below to view additional information on the current funding crisis in British Columbia:
Disease: Multiple Sclerosis*
2020 BC Government Grant Amount: $252,900
2020 BC Government Gaming Grant Amount: $526,000
Total Amount of Funding from BC Government: $778,900**
# of People in BC: 10,000
Disease: Muscular Dystrophy*
2020 BC Government Grant Amount: $270,827
2020 BC Government Gaming Grant Amount: $103,000
Total Amount of Funding from BC Government: $373,827**
# of People in BC: 4,000
Disease: Cerebral Palsy*
2020 BC Government Grant Amount: $56,623.20
2020 BC Government Gaming Grant Amount: $427,500
Total Amount of Funding from BC Government: $484,123.20**
# of People in BC: 4,500
2020 BC Government Grant Amount: $0
2020 BC Government Gaming Grant Amount: $136,000
Total Amount of Funding from BC Government: $136,000
# of People in BC: 40,000+
*It has been found that more people have epilepsy than those who have Multiple Sclerosis, Muscular Dystrophy and Cerebral Palsy, combined. In fact, even if you multiplied the numbers from those conditions by 2, you would still not reach the dire numbers of epilepsy.
**The government of British Columbia awarded a total of $1,626,850.20 to help the 18,500 individuals living with Multiple Sclerosis, Muscular Dystrophy and Cerebral Palsy in British Columbia yet they awarded only $136,000 to help the over 40,000 individuals living with epilepsy in British Columbia.
Due to the above, it becomes clear that there is an epilepsy crisis in British Columbia. With your help, we hope to:
- Raise much-needed awareness about epilepsy as a disease
- Shine a light on the hardships that people living with and affected by epilepsy in British Columbia are going through
- Impact policy change at the highest level
- Inform funding decisions to promote social justice and systemic reform across all sectors including, but not limited to, legal, medical, public health, education and employment
- Improve infrastructure for:
- More SIU epilepsy beds
- Several neuropsychologists and neuropsychiatrists attached to epilepsy clinics
- More neurosurgeons (we have two)
- More research dollars
- Several system navigators (we have none)
- Job protection and support
- Access for legal assistance
- Special designations for epilepsy supports in education
- SAVE LIVES!
We desperately need your help in the fight to raise awareness of the epilepsy crisis in British Columbia. We hope that you will sign our petition to help end the epilepsy crisis in British Columbia. For more information, please visit the BC Epilepsy Society website at www.bcepilepsy.com or the website for the I AM A VOICE for Epilepsy Awareness™ campaign at www.iamavoiceforepilepsy.com
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