Hi, my name is Anna and I was diagnosed with Type 1 diabetes in January 1994.  I have always suffered from brittle diabetes, however for the past 15 months I have also been suffering from nocturnal hypoglycemia (which is low blood glucose levels that occur at night, during sleep) causing seizures for which I was recently seen by a neurologist.  It has been determined by my endocrinologist and my head nurse that I MUST have a continuous blood glucose monitor (CGM) to mitigate the extreme glucose fluctuations that I am experiencing, which are causing very serious seizures, in order to avoid any further occurrences of them.  These seizures only happen during the night when my blood glucose levels suddenly drop so extremely that my brain becomes so deprived of glucose, it can no longer function normally. This condition is called neuroglycopenia and when this happens, I am no longer able to treat my low blood sugar myself even if I would be awake.  I would need assistance from another person.  However, as I am a single mother, there is no one else except my daughter who could possibly assist me if these extreme lows happened during the day.  Since they happen at night, my body shuts down and goes into survival mode, and I go into seizure.  Each night I am absolutely petrified of falling asleep.  Such a natural thing to do, but so hard for people like me.  

During these seizures, all my body muscles tense up and my entire body jerks violently.  I lose all control over my body movements and my speech and I always experience severe biting of my tongue which causes bleeding from my mouth which results in several days of extreme pain, great difficulty in speaking, chewing and drinking.  The fluctuations in my glucose levels have become life-threatening and the seizures have caused extreme anxiety in me and are an enormous stressor for my daughter.  A child should never have to witness their parent going into seizure and bleeding from the mouth which is terribly scary and traumatizing for them.

Severe and frequent hypoglycemic episodes not only can cause seizures, but also coma or even death.  Apart from wearing a CGM, there appears to be no other way to guard against future episodes.  A CGM is an FDA-approved device that provides real-time glucose readings, throughout the day and night, allowing people with diabetes to see their glucose levels and track how quickly they're increasing or decreasing. A typical CGM provides a glucose reading once every 5 minutes and has the ability to sound an alarm when glucose levels begin to fall below the acceptable range.  A CGM and its alarm would be what would help me and other diabetics suffering like me to keep glucose levels from dropping into the life-threatening zone.

In 1991, two British diabetes specialists, describing 22 cases of unexplained sudden death in young patients with Type 1 diabetes, came up with the term “dead-in-bed syndrome.”  This is when a Type 1 diabetic goes to bed perfectly well managed and for unknown reasons they pass away in their sleep from either extreme high or low blood sugars through the night. Studies from Europe estimate that the dead-in-bed syndrome is responsible for 6% of the deaths of patients under age 40 with Type 1 diabetes.  If I don't control these extreme lows, there is a chance that I will become such a statistic.  Research shows that there are no published reports of nocturnal hypoglycemic seizures while a patient is wearing a CGM device.  If CGMs were affordable then these people would still be here with us today.

The Assistive Devices Program (ADP) is a program run by the Ontario Ministry of Health and Long-Term Care and is intended to provide residents of Ontario, who have long-term physical disabilities, access to personalized equipment and supplies that are needed to meet that individual's basic needs.  "Physical disability" is a very broad term used by the government and includes, among others, diabetes.  In most cases ADP pays 75% of the price of such a device if the individual meets their eligibility requirements.  Such requirements include, but are not limited to, being an Ontario resident, possessing a valid Ontario Health card issued in their name, and having a physical disability of at least 6 months.

Unfortunately a CGM is an extremely expensive device which is not covered by any insurance provider in Ontario and is also not covered by the ADP.

The government's ADP is the only option which could be made available to assist diabetics who, like me, cannot afford to purchase the device but have no other alternative available in keeping their glucose levels in a normal range.

A CGM consists of 3 parts.  The following prices are based on a Dexcom CGM.

*  Small Sensor that measures glucose levels just underneath the skin. These sensors are purchased in 4 per package and cost $340.  One package lasts 28 days.

*  Transmitter that is fastened on top of the sensor and sends data wirelessly to the receiver.  These have a lifespan of 6 months and cost $800.

*  Receiver that displays glucose trends so you can see when it’s high, low or within range.  This unit costs $700 and needs to be replaced once per year.

Given these prices, the cost of a CGM is $6,720 per year, EVERY year.

There are more than 10 million Canadians living with diabetes or prediabetes, and with more than 20 Canadians being newly diagnosed with the disease every hour of every day, this number is quickly growing.  Chances are that you or someone you know is affected by diabetes. Nocturnal hypoglycemia is common in Type 1 diabetics. 

Please help me in asking the Ontario Minister of Health to revise the list of devices covered by ADP to include CGMs by signing this petition and sharing it on social media.  Thank you so much for your support.

IMPORTANT:  You MUST see a "thank you" page after signing, otherwise your signature will NOT count.  Please note that phones and tablets do not always show the "thank you" page.  It is best to sign the petition from your laptop/desktop.  You can visit "change.org" and search for "Bernecka" to find this petition.  Thank you so much for your help!!