When my son was 14 he was diagnosed with Type 1 Diabetes.
It came out of nowhere.
It was the long weekend before Labour Day; he was about to start grade 10. That summer he had an adolescent growth spurt. When a colleague met him that summer he jokingly asked him if had fallen asleep in the green house, he had grown so tall (6 feet!). He had also thinned out but overall seemed fine.
However, towards the end of August we noticed that he was appearing rather gaunt looking. On that last weekend he said he felt sick and he was sleeping a lot. Within a 24-hour period he became very dehydrated, lethargic and his physical appearance deteriorated very quickly. It happened so fast it was shocking.
We drove him to emergency. He was going in and out of consciousness. Within minutes of arrival, a Doctor told us he had all the symptoms of Type 1 Diabetes and that he was going into ketoacidosis shock. This is a period where if you don’t act quickly, bodily organs start to shut down and you can go into a coma and die.
He was rushed from our local hospital to Sick Kids by ambulance where they stabilized him and saved his life. We were shell shocked. After ten days at Sick Kids, our wonderful son came home.
As a family we had to learn about Type 1 Diabetes, and more importantly, our 14-year-old son had to learn how to live with this incurable disease. Type 1 Diabetes, once known as Juvenile Diabetes or Insulin-Dependent Diabetes, is a chronic condition in which the pancreas produces little or no insulin. Insulin is a hormone needed to allow sugar (glucose) to enter cells to produce energy.
Despite active research, Type 1 Diabetes has no cure.
Type 1 Diabetes is an autoimmune disease, which means it results from the immune system mistakenly attacking parts of the body; the immune system incorrectly targets insulin-producing beta cells in the pancreas. Nobody knows why this occurs, or how to stop it. The immune systems of people with Type 1 Diabetes continues to attack beta cells until the pancreas is incapable of producing insulin.
Type 1 Diabetics need to inject themselves with insulin to compensate for the death of their beta cells. Everyone with Type 1 Diabetes is insulin-dependent. Simply put, if they don’t take their insulation every day, they die. They live and cope daily with the stress of knowing this. They must manage what they eat and measure their blood sugar levels five to six times a day by pricking themselves and getting a drop of blood and then measuring their levels.
Some Type 1 Diabetics use a “pump” which is attached to the side of their abdomen and measures their levels and dispenses insulin. The pump was not working for my son — it has its own problems — so he uses needles several times a day to inject his own insulin. It is a marvel how he does it every day.
I have always had a phobia about needles and I had to work my way out of that when he was first diagnosed, to inject him with needles containing insulin. I would turn pale while looking for a spot on his arm or abdomen for the needle injection, and then try to do my best “man up” and stick the needle in. About a month after he was back to school, I decided to take him on a trip to Berlin, Germany, a place he had always wanted to visit. I knew I would have to inject him with the insulin on the trip.
On the flight to Germany, as I was preparing to give him his insulin shot, I turned very very pale. My hand was shaking. My son noticed and he took my arm and said, “Dad, it’s okay, I’ll do it. It’ll be fine" and he gave me a big hug. He has been injecting himself ever since. I was both heartbroken and immensely proud. Heartbroken at the fragility of my son’s health due to this affliction that I knew he would have to live with in a real way, daily, for the rest of his life, yet proud of his strength to be able to stick that needle in his arm or stomach, so he could eat his lunch or dinner, just so he could live.
The key to living as healthy and normal a life as possible with Type 1 Diabetes is to keep your blood sugar in check and your glucose levels stable. A second key factor is to avoid stress, which can play havoc with your body and blood sugar levels.
Common Type 1 Diabetic complications include Diabetic Ketoacidosis (DKA), a condition caused by severe hyperglycemia (high blood sugar) that causes rapid fat breakdown in the body. As the fat breaks down, they release fatty acids which are then converted into chemicals called ketones, which are highly toxic in large doses. Symptoms of DKA can include hyperventilation, dehydration, nausea, and pneumonia-like symptoms. If the condition persists without treatment, it can lead to coma, cerebral adema (swelling of the brain), or even death. The more severe symptoms have grown much rarer over the last few years, with death occurring in only two per cent of all cases, but it is still a very dangerous condition.
For Type 1 Diabetics the key to maintaining a healthy life is keeping your blood glucose in a safe range. Maintaining and managing blood sugar control is necessary to live, and it is expensive. In Canada, Type 1 Diabetics are not fully covered by universal health care and on average Diabetics must pay between $10,000 and $15,000 dollars per year for their insulin, test strips, pumps, syringes and other paraphernalia required to keep them alive. CRA and government officials know this, which makes their decision to punish Diabetics and make them pay more to stay alive infuriating.
It is true that there are shades of grey in many things. But it is also true that some things are right and some are wrong.
This is very wrong.
I started my career as a Legislative Assistant and speechwriter at the House of Commons and worked for several principled Liberal MPs. When Jean Chretien became Prime Minister and determined he needed to make massive cuts for an austerity plan to get the country’s finances sorted out, he and his Ministers went out of their way to protect the vulnerable from harmful cuts or taxes policies that would harm them. My principles back then were progressive and they are the same today.
We never saw small business, farmers, doctors, dentists, and entrepreneurs as privileged. In fact, it was the opposite. We believed that it was entirely because of these risk takers and entrepreneurs and wealth generators that Canada was able to afford a universal health care system and the many other things that we treasure. And we certainly didn’t look at a person with Type 1 Diabetes and say, “Hey –let’s suck some revenue out of them because they must be taking advantage of their lifelong and incurable autoimmune disease by filing for a small tax credit to help pay for their life saving medicine and treatment”.
Parliamentarians have a duty to protect the vulnerable. Instead, this Liberal government has decided to target some of the most susceptible people in Canada.
What makes things worse is that despite initial denials that they were doing this to the 150,000 Type 1 Diabetics, the government has basically fessed up and admitted it. Incredulously, CRA Minister Diane Lebouthillier is claiming that “advances in technology” are the reason that most adults with Diabetes now don’t qualify for a disability credit that can reduce their tax bills by as much as $1,500 a year. This "advances in technology" claim is patently false. The insulin pump technology she is referring to has many problems and does not work for everyone. It is also very expensive. Let’s be clear. If Type 1 diabetics do not take their daily insulin shots and retain the ability to measure their blood sugar with very expensive test strips (6 to 8 times per day), they will die.
Besides coping with the daily stresses of managing their serious disease, Diabetics are now being told by their Liberal government that they are tax cheats which is untrue, unnecessary, upsetting and humiliating.
What’s really infuriating is that the CRA Minister Lebouthillier seems completely ignorant about the realities of Type 1 Diabetes and has done nothing to become educated about it. Worse, is that instead of listening to the Diabetes Canada, the Canadian Medical Association, or even Type 1 Diabetics themselves, and other informed medical professionals, she chose to listen to faceless bureaucrats at CRA without questioning them. She went along with their plan to target one group of very vulnerable people in Canada who have a long-term incurable medical affliction that is not covered by healthcare. Yes, why not double down on their misfortune and make them pay even more.
Ironically, this decision was made by CRA government employees who all make six figure salaries and have gold-plated healthcare, prescription drug plans, and incredible pensions all subsidized by taxpayers.
So, through this inexplicably stupid policy, the Liberal government is making sick people pay more to stay alive. It is beyond shameful.
I suggest Prime Minister Trudeau, Finance Minister Morneau and Diane Lebouthillier visit a hospital and see patients who are suffering from the serious complications of Type 1 Diabetes. Some have lost their vision, some their limbs. Their life expectancy is a decade or more less than other Canadians.
Every day my son exercises, eats healthy, and works hard to manage his Diabetes so he can stay alive. The irony is that the Trudeau government sees no contradictions or problem in using taxpayer’s money to pay for free syringes and drugs for drug addicts and criminals just blocks from Parliament in, Sandy Hill, yet they turn around and target and penalize vulnerable Type 1 Diabetics who are paying thousands of dollars annually for medicine just to stay alive. Good one.