Outside of November (World Diabetes Month), it’s not that often that Type 1 diabetes hits the mainstream media. This past week though, if you’ve been anywhere near the tv news, talk radio, or a facebook feed, you’ve probably heard that the Canadian Revenue Agency (CRA) has made drastic cuts in approvals of Disability Tax Credit applications for adults living with Type 1 diabetes. This has been done without any substantiated explanation or evidence to support that any Type 1 diabetes therapy requires fewer than 14 hours per week to manage – the standard being used for approval of the credit. The CRA denial documents claim that “the type of therapy indicated [in patient applications do] not meet the 14 hour per week criteria.”
This, followed up by a letter from Revenue Minister Diane Lebouthillier outlining that the CRA believes that advances in technology (read: Insulin Pumps) have decreased the time needed by adults to care for for Type 1 diabetes.
Perhaps the biggest insult to the Type 1 community is the fact that the CRA has decided that their evaluation of the care needed for Type 1 diabetes supersedes the recommendations of the medical community. Each applicant works with a medical professional to document the minutes and hours required for proper care. An application cannot be submitted without a signature from a medical professional (and, in most cases, follow-up communication with that medical professional to confirm the details included in the application.)
All of this seems confusing if you aren’t familiar with the credit or the costs of living with Type 1 diabetes in Canada. We wanted to take a moment to address some misconceptions, to lay out some facts, and to encourage the community to take action outside of social media and really make our voices heard.
Note: I have, personally, qualified for the Disability Tax Credit in the past. I was asked to renew my application last year. It has been denied. Twice.
Misconception: Insulin is free for people with diabetes in Canada
It’s a very common misconception that insulin is free in Canada. Let me tell you. It’s not.
And remember, health care is a provincial matter, so some pieces of this puzzle differ from province to territory. I live in Ontario, so I’ll tell you some of the Ontario story. Do some googling to find out how this is similar to your own province/territory.
To take it back a few steps – If you’re new to diabetes and reading this, what you need to know is that Insulin is our elixir to life. The magic sauce that keeps us… alive. Without Insulin, you don’t live very long… at all. You see, Insulin is what lets our bodies use sugar. Without it, our bodies will use fat and protein (muscle) for energy. And a by-product of breaking down fat and protein are ketones – poison, more or less**. To get rid of the poison, you need insulin. You can see where this is going. Without insulin, you have a few days, max.
(*If you’re on a ketogenic diet, whether you have T1 or not – well, those ketones mean something slightly different. Another blog post?)
So you can see the challenge here. If you have Type 1 diabetes, you require insulin. To be alive. And the costs are out of pocket. Unless, of course, you’re someone who has a job with benefits. If you’re lucky, that benefit plan might cover some of your insulin. But that’s not the case for the majority of people including students, young adults looking for their first job, teens without parents with benefits plans, individuals who find themselves laid off or without work, anyone working part-time, people who own their own businesses, anyone waiting on a health card… the list goes on.
But wait – we have universal health care in Canada, don’t we? Well, yes. We do. And if you’re living with diabetes, you’ve probably felt pretty lucky for this. It means we can get in to see a doctor, nurse, dietician, social worker, diabetes specialist, etc etc almost whenever we need. But all of the plans and coaching and advice and suggestions only get you so far if you can’t afford the tools or drugs that basically everything in the diabetes education world is centered around.
So to clear things up. The things that are paid for out of pocket by most people with Type 1 diabetes (remember, we’re framing this scenario in Ontario – things are slightly different in different provinces) include:
- blood test strips
- syringes (but you can get these for free if you’re using them for…other sorts of drugs.)
- insulin pen caps
- insulin pump supplies
- some insulin pump costs
- continuous glucose monitoring (CGM) systems
- CGM sensors
Fact: It is darn expensive to live with Type 1 diabetes
I thought it might be helpful to do a little breakdown here. I’ll use me as an example. Of course, every person is different – insulin needs are different, tools used to manage are different, and our lifestyles are all very different. We’re all working towards the same goals, though – to live a full and healthy life without complications of diabetes. (If you have diabetes, you can stop reading this next little bit. We’ve heard it enough. If you don’t and you’re wondering what these complications we speak of are, think anything to do with nerve damage from extra sugar hanging out and oxidizing/breaking down – peripheral nerve damage, eye problems, kidney problems, heart problems, erectile dysfunction… I’ll stop there.)
So, if you’re like me (33 years old, single, working for a small nonprofit, using 60-80 units of insulin each day, on an insulin pump, using (religiously) CGM technology, just celebrated by 30 year diaversary, living in Ontario), here’s what you might expect to pay each month on your diabetes:
Grand Total = $942.68/month
Now, I do live in Ontario and I’m grateful to have access to the Assistive Devices Program (ADP). What that means is that I receive $200 per month to help subsidize the cost of insulin pump supplies. You’ll also notice that I didn’t list the insulin pump itself on this breakdown. Typically, that will cost you in and around $6500 (yep, that’s right) and last you for 4-5 years. So long as you meet certain criteria, you can also qualify for this cost to be covered by the ADP program.
This brings my out-of-pocket costs down to $743 per month. Or $8912.16 per year.
*I am also very lucky to work for Connected in Motion. Recently, we bought into a drug benefits plan with the Chamber of Commerce (more on that in another blog) and fought for CGM coverage to be included in our plan. We each pay $140 per month to access the plan, and this gives us 100% coverage of CGM supplies and 80% coverage of insulin and strips. For the first time in my adult life I have coverage for some supplies. If you love math, see below for its impact. I AM SO GRATEFUL FOR THIS.
Total cost of diabetes supplies each year: $11,312
Total cost of benefits plan each year: $1680
Total ADP support in Ontario each year: -$2400
Total savings on insulin, strips, and CGM from benefits each year: -$7462
Jen’s REAL out of pocket costs = $5530/year
What is the Disability Tax Credit?
Okay – now on to the Disability Tax Credit (DTC). The disability tax credit was created in 1988 as a way to help people who had significant out of pocket costs associated with physical or mental disabilities. In 2005, the credit evolved further and became open to individuals who were either markedly restricted in their day-to-day lives or who required life-sustaining therapy. That second part is what we’re going to focus on here as it relates directly to life with Type 1 diabetes.
It relates so directly, in fact, that the CRA uses case studies of individuals with Type 1 diabetes and on insulin pumps in their examples when guiding people through the DTC application process.
But you don’t just receive the credit because you have Type 1 diabetes. You need to complete a pretty time-intensive application process, working to document every activity you do through a typical week that relates to life-sustaining therapy. The strange thing is – the most challenging, frustrating, and time-sucking parts of Type 1 diabetes therapy aren’t permitted to be used in the application.
At the end of the day, if you can successfully document 14 hours a week of life-sustaining therapy and have your doctor work through your application with you and sign off that you’ve included only those tasks that are medically necessary, you can send your application off to the CRA for approval. If approved, you are able to access the DTC – a $1500 non-refundable tax credit. You’re also able to open a Registered Disability Savings Plan (think, RRSP for people with a disability) – More on THAT in another post.
However, the CRA, under the guidance and directives of the Liberal leadership, have decided that they can make better decisions about the time and care needed to live with Type 1 than we, the people who live this day in and day out, and the medical community can. They’ve decided that because of advances in insulin pump technology (that many people cannot afford to access), Type 1 diabetes is no longer enough of a burden on adults to warrant the tax credit.
What kind of things can I count in my 14-hours?
Over the years, we’ve heard an entire spectrum of comments about the 14-hour requirement of the DTC – Anything from “14-hours? Are you crazy? What on earth are you doing if you require 2 hours each day to care for your diabetes? You’re doing something wrong” to “14-hours? Are you crazy? It’s 24/7. I don’t even get a break when I’m sleeping! This is going to be a walk in the park!” I wanted to spend a moment outlining the activities that are acceptable to account for in the 14-hours, and those that aren’t. In recent Beyond Type 1 poll, 68% of individuals voted that they spend more than 20 hours a week on their diabetes.
- The time it actually take to deliver the insulin, whether that be through syringe or insulin pump. You can’t use the time that insulin is physically going into your body. Okay. Fair.
- Activities related to dietary regimes, even if they are required to dose medication. Okay. Not fair. (This one is a bit crazy not to include. One of the biggest time sucks in the world of diabetes is analyzing food. Sure, we can get good at it – if we eat the same thing in the same quantities cooked the same way every single day. If you’re not living with Type 1, try tomorrow to record the macronutrient breakdown of every food you’re eating throughout the day. It sucks.
- Activities relating to exercise, even if it is a factor in dosing medication. Or, in the case of someone with Type 1, perhaps the greatest tool that can be used, outside of insulin, to tame this beast. No time spent adjusting insulin doses to accommodate for exercise, nor the actual exercise itself can be counted. Still not fair.
- Travel time to receive therapy and attend medical appointments. Ugh. Above we mentioned the criteria to qualify for the Assistive Devices Plan here in Ontario. Part of that criteria includes regular visits to a diabetes clinic along with blood work done routinely. I didn’t even include the costs of travel to these appointments, parking, missed time from work, etc into the monthly cost of Type 1 above. Whenever you have a diabetes appointment, you need to schedule at least a half day to get through it. And that’s if you live within a quick hop-skip-and-jump from your hospital. Typically, you’re in to your diabetes clinic 4 times per year. And then there are the added appointments to keep your eyes happy. And what if you need to access a social worker? Or a counsellor (have you seen the relationship between Type 1 diabetes and mental health?). Not fair.
- Buying Medication. Takes time. Even for the most organized of Type 1s who have their prescriptions on auto-renew or who use a prescription delivery service, this takes time. But don’t count it. Blah.
- Recuperation after therapy. This includes treatments for high and low blood sugars. Okay, in a perfect world, no one would ever experience these (Cue laughter reel. And again.) But that’s not the case. In a non-scientific survey of our Slipstreamers, the average Type 1 experienced 5 low blood sugars and 2 high blood sugar each week that caused them to have to alter their day. So what does that mean? You need a minimum of 15 minutes to treat a low – and most of us know, that really means at least 30 minutes until we can properly function (read: drive, type, carry on a conversation, coherently read emails, make important decisions, etc.) High BGs also wreak havoc in a day. You know how you feel when you’re hungover? It can feel the same. What you need is more insulin and more rest and more water and ready access to a bathroom. But we can’t count this either.
Okay – so what CAN we count. Let’s take a look:
- Checking blood glucose levels. (Remember, this typically happens first thing in the morning, before and after eating, before and after exercise, and before bed. And, of course, whenever you don’t feel right. If you’re wearing a Continuous Glucose Monitor, testing still happens – you can also add the time for changing, calibrating, etc your CGM.
- Preparing and administering insulin. Including preparing the insulin pump itself, changing pump sites, changing reservoirs, changing tubing, etc. It also includes the time spent to calculate temporary basal rates, boluses, corrections, and to check rates and ratios.
- Calibrating equipment. And setting up/making adjustments to your pump. Calibrating your meter with your blood lab results and setting up your CGM, can also count.
- Testing ketones. Remember – the poison? It is recommended that blood ketones are tested whenever BGs are over 14.0 mmol/L or whenever you’re feeling ill/off. This becomes especially important if there is sickness in the household/community and/or if the individual is using other drugs, alongside insulin, to treat their diabetes. (Oh, and I forgot to add this into the yearly totals – Blood ketone strips cost just over $2 a piece.
- Keeping a log-book of trends. This IS becoming more automated, but despite the fact that most people no longer keep pen and paper logbooks, the incredible amount information that is available to recorded, tracked, and analyzed is intense. Using myself as an example, I’m currently tracking my BGs, ketones, insulin dosages, temporary basal rates, sleep, activity (type and duration), glycemic index of foods, stress and the relationships between those things. (Thank you, Apple Health for making that easier. Another blog on that later. This list is getting long.)
What can I do to help?
There is a clear call to action to the diabetes community here – the pressure needs to be put on the Liberal government to listen to the voices of the diabetes community. As a whole, the diabetes community represents approximately 10% of the entire population in Canada. There are an estimated 3 million people living with diabetes (of all kinds) out of Canada’s total population of >30 million. We have a powerful voice.
A friend in the Type 1 world, Melissa Lee, posted on Facebook the other day: “There is one thing our community does well – outrage. And only one place our community routinely fails to call it forth – policy advocacy.” Let’s change that.
If you’ve stumbled across this blog then chances are you are in some way touched by diabetes. Whether you’re living with Type 1 yourself, have a family member with diabetes, are a caregiver, a medical professional, or a member of the general public, please take a moment to lend the community your voice. Let your local MP know your thoughts, experiences, and the impact of these cuts will have on you, your loved ones, or the community in general.
You can find out who your local MP is and access their contact information here.
You can access a customizable letter put together by Diabetes Canada to address this issue, here.
And let us know if you’ve chosen to voice your concerns to your local MP – We want to help build and celebrate a community that is being an active part of change.