Imagine you wake up to an alert on your phone at 3 a.m. The alarm is for your blood glucose level, not for the start of your day.
You fumble in the dark, shove some fruit gummies into your mouth or down a juice box to treat your hypoglycemia (low blood glucose). You try to wait at least 15 minutes, though sometimes more, for those blood sugar levels to get back in range so it is safe for you to try to fall back to sleep.
Or imagine waking up in the morning and looking at your phone, the blood glucose numbers overnight portraying a death-defying roller-coaster ride, your nightstand in disarray, garbage from the overnight hypo scattered everywhere, and you think to yourself, “I am so lucky I woke up. I am so lucky to be here today.”
Now imagine you never got that alert. No alarm went off to signal your low blood glucose levels. Imagine never waking up and succumbing to silent death.
That is the terrifying reality that too many people living with Type 1 diabetes and their caregivers face every single day as that technology lies beyond their reach.
Imagine you walk into the pharmacy every month to pay for the air that keeps you alive. The pharmacist tells you the price has increased and it’s not one you can afford. What do you do? You need that air to breathe, to live.
This is the reality too many people living with Type 1 diabetes face when they buy insulin. And because many are still unable to pay for that life-sustaining drug, they ration or stop taking it altogether, risking their lives.
Just as we cannot live without air, someone living with Type 1 diabetes cannot live without insulin.
Life with Type 1 diabetes creates a lot of extra work; stress about medication coverage shouldn’t add to it
Living with diabetes comes with stigmas. Because it is so misunderstood, most people fluff it off or blame the person for the condition.
But life with Type 1 diabetes is complicated. Those like me who live with it are faced with many challenges in our daily lives. We make an extra 180 health-related decisions every single day. Decisions about travelling away from home, when and where to check our blood sugar, even what we eat and when are fraught with potential complications. Going on a hike and forgetting to bring a snack can become a life-or-death situation.
Type 1 diabetes is like a full-time job you don’t get paid for; there are no vacation days or time off, either. In fact, it’s more than a full-time job because it is a 24- hour- a- day job. It can be stressful, overwhelming, scary, and unpredictable.
And that is one of the reasons I advocate by educating whenever I can.
In 2019, I stood on my porch with (former) Liberal MP Kate Young and listened to her talk about the Liberals’ national pharmacare plan.
We chatted for quite a while, as I shared my story about living with multiple chronic illnesses, including Type 1 diabetes, and struggling to afford medications and devices that not just aid with management of those illnesses but also keep me alive.
I even shared with her my relation to Sir Frederic Banting, and we awkwardly acknowledged the irony of that connection and my struggles to afford the very thing he is accredited with co-discovering, insulin.
Throughout our discussion, I also highlighted all the hurdles I had faced gaining access to those things. And she excitedly shared the Liberals plan to end them.
I was excited, too. Then ultimately disappointed. Although the Liberals went so far as to appoint an advisory committee, led by Eric Hoskins, into the implementation of national pharmacare, the committee’s report, published in June 2019, has languished. Pharmacare has not yet been implemented and the pandemic – and the Liberal/NDP supply and confidence agreement – only further entrenched Big Pharma’s power in Ottawa. In the year since the agreement, Big Pharma nearly quadrupled its lobbying of the health minister and his staff. The Patented Medicines Price Review Board, which is supposed to ensure fair drug prices for Canadians, has also seen a spate of resignations, with some former board members saying Big Pharma’s influence has made their work all but impossible.
All Canadians deserve to feel as healthy as possible and that means universal access to medications and devices
Year after year, the price of living with Type 1 diabetes soars.
We hear a lot about the insulin crisis in the U.S., where people are dying because they can’t afford insulin and do not have access to diabetes devices; we assume that it isn’t happening here. That couldn’t be further from the truth.
At the time of my conversation with former MP Young, we did not have coverage. The continuous glucose monitor (CGM) I was wearing, which monitors my blood glucose levels and allows me to take preventative measures instead of reactive ones, had been gifted to me by U.S. friends with coverage and access.
I was constantly nauseated and exhausted, signs of high glucose levels that can lead to diabetes ketoacidosis, a serious condition that can lead to a diabetic coma or death, because I was not taking my required insulin in the hope of stretching my supply.
It’s 2023, and I am in the 59 per cent of people unable to afford what they need and without coverage either through employment or with a provincial program.
While you can walk into a Canadian pharmacy and purchase insulin without a prescription, that vial will cost you between $30 and $50 and it is not a singular answer; it may need to be bought several times a month.
Annual insulin costs can be large. If you use an insulin pump, those costs are even higher. And it depends largely on the province in which you live.
Insulin isn’t a cure.
It is a life-sustaining medication and no one in need of it should ever go without it.