When Audrey was first diagnosed, Heather was a stay at home mom and Mike, Heather’s husband, worked an office job for the oil patch. He did not make a large income, but it was enough to cover their family needs. His employment offered benefits, which enabled them to cover the majority of the cost of diabetes supplies, leaving the family with roughly $100 per month to cover the rest. Essential ongoing monthly diabetes supplies include items such as test strips for checking blood glucose, alcohol wipes for cleaning the skin prior to injection, and syringes for providing insulin before meals and snacks.
Prior to her daughter’s diagnosis, Heather and her husband did not worry about money. They were aware of their cost of living, kept to a budget, and lived below their means. But once their daughter was diagnosed with type one diabetes, they found themselves short every single month by $150. This shortfall led to the family being even more careful with their money in other areas. Heather spent time meal planning more carefully; they held back from eating out once a month, and cut out family holidays, in order to make ends meet and cover all monthly expenses.
Heather and her family were early adopters of Dexcom, a continuous glucose monitoring system that helps to track her daughter’s blood sugar levels. The device is inserted into the skin of a diabetic and checks glucose levels every five minutes. The number is sent via Bluetooth to a receiver so that a diabetic and her family can monitor blood sugar levels. This device replaces the painful and inconvenient finger poke that is otherwise required to check glucose numbers multiple times per day (and night). This device is a lifesaver: it signals alerts when blood sugar levels are out of range, when too high or too low. Once alerted, the diabetic and/or her care givers have the chance to take appropriate action to bring glucose levels back into a safe range.
Dexcom, however, was not covered by her husband’s benefits plan and so they had to pay out of pocket to use this device.
When Audrey first started to use the Dexcom, it had to be replaced every 7 days, and the transmitter would need replacing every 6 months. This cost $7,000 per year out of pocket. Heather and her husband found ways to extend the life of the sensor to help save on cost. However, by making changes to the device, the family could no longer rely on Dexcom customer support to help troubleshoot anything that went wrong. And so another hidden cost emerged: the cost of time. It took time to research and to find out ways to extend the life of the sensor and battery life of the transmitter. And this was not always fully reliable, which added the burden of stress and uncertainty in addition to the stress and anxiety that comes from living day to day life with diabetes. To work around the system, you would have to figure out ways to do this yourself or find other families who are doing the same thing, to help one another overcome hurdles along the way.
A year and a half into Audrey’s diagnosis and Mike lost his job. Audrey was now in grade one, and Heather was still being depended upon as her medical support person for in-class snacks, meals, events and field trips. Being needed in school like this robbed Heather of the opportunity to go back to work, as she had originally planned on doing once both her children were in school full-time. Without a school nurse, or EA for her child, this was an impossibility. With the loss of Mike’s job came the loss of health benefits, and so Heather’s family was left to absorb the full cost of diabetes. This left the family with no income, and several hundred dollars owing per month, just for diabetes management. There was a long wait period before they could receive any financial aid; thankfully they were financially responsible prior to this happening. They did not have any debt, and they cashed in their tax-free savings to help them ride out this period of unemployment.
Heather heard about the Alberta Pump Program, which is a program that provides families with an insulin pump and covers the cost of the pump and supplies, except for the cost of insulin and a CGM (like the Dexcom Audrey was using to monitor her blood sugar levels without doing finger pokes). There is a high demand for this program and not everyone is accepted. If you are accepted into the program, all supplies are free. However, it can be years of sitting on the wait list before getting accepted into the program, if in fact, you are one of the lucky ones to be accepted into the program at all. With nothing to lose, Heather went ahead and applied for the program. She went through a rigorous training program that is as a part of the application process… and after a period of waiting, their family received the very happy news that they were accepted into the program! This announcement came in March of Audrey’s grade one year. Heather appreciated that this program would help to lift the financial burden of diabetes care. However, this good news came at a cost of having to be brave. They would move forward with the pump, before either she or her daughter felt emotionally ready to do so. It can be a scary feeling to insert a bulky device into your skin, and have it become a part of your body, in order to help function as normally as possible.
In this case, the benefit of having financial relief, that came as a result of the pump program, outweighed the emotional strain that came along with this decision. Heather could continue to be Audrey’s medical support person in school and stay home with her children through the summer months when they were off school. This created a sense of stability in the home environment which then enabled her husband, Mike, to make a career change and pursue his lifelong dream of becoming a police officer. Mike focused on and completed his police training, eventually becoming an RCMP officer.
When September rolled around, Heather took on some house cleaning jobs to help supplement their income. This was the only type of work that afforded Heather the flexibility of working the same hours that her kids were in school, and enabled Heather to be available to help her daughter if something came up where she needed her. Prior to having children, Heather was a travel agent, and she was planning on pursuing this career path once again, once her children were old enough. Heather had applied for this position and was even at a point in her interview process where she was about to be hired for the job, but then it fell through under the point of needing a more flexible work schedule to support her daughter. Diabetes stole Heather’s dream away from her. Although Heather does not begrudge her daughter of this loss, it is still a disappointment that the disease imposed upon her life. Heather holds on to hope that there will be future opportunities that she can pursue again one day.
When Mike secured his position with the RCMP, it came time for the family to move. He was positioned close to Calgary, and so they moved from this cozy small town in Central Alberta where housing, groceries, and cost of living in general was lower, to the city where the cost of living jumped substantially. In fact, their bills doubled in cost. Even with a substantial down payment for a home, their mortgage doubled. Cost of groceries, schooling, bus and transportation all add up. So although Mike found a good position and has an income once again, finances remain tight due to the cost of living in Calgary. Additionally, RCMP officers are among the lowest paid in the police force. Thankfully Mike’s position also comes with benefits, and so once again, part of the financial burden is lifted and now even helps to cover the cost of their daughter’s Dexcom. However, Heather has to fight tooth and nail every single month in order to receive the benefit. This is an exhausting and time-consuming task to sort out and deal with on an ongoing basis. Mike receives great personal benefits, but then as listed dependents to his plan, Heather and the kids have less available to them. And these benefits come with a catch: they would easily receive benefits to cover their Dexcom if they paid for the pump and Dexcom together. However, because the pump is supplied through the Alberta Pump Program, it doesn’t register through the benefits plan that a pump is being used, and so Heather’s family often deals with having their daughter’s Dexcom be denied under her husband’s plan. It’s a complicated process in getting all of this sorted out, as Heather is listed as a dependent and the benefit company won’t communicate with her as readily as they would if she were the main recipient on the plan. Their family is made to jump through hoops in order to make claims and it can be so frustrating. Even after having letters from their doctor stating the fact that their daughter is on a pump, and uses the Dexcom to support her diabetes care, the benefits company still do not believe them. It’s completely aggravating how the system is set up in such a specific way and if there are exceptions to the rule, it becomes extremely difficult to get this sorted out. This is a recurring monthly headache that Heather deals with.
As Audrey continues to grow and mature, her diabetes management will slowly become her own, and the close monitoring and responsibility of her parents will start to shift more towards being a support towards Audrey’s learning, trial and error, growth and care for this disease. This is difficult for Heather to think about, as this disease is relentless and requires so much time and attention. Some aspects of diabetes management do get easier with time and practice, but it’s always there, like a shadow. You cannot take a holiday from it, and this can lead to burnout. Heather plans to support her daughter for as long as she can, wanting to give her daughter the gift of a childhood, so that her own worries and fears can be minimized.
But this disease is a thief; one of many things that gets robbed from a diabetic’s life is that of opportunity, due to the financial burden that it imposes on all of us who live with it. Heather worries that her daughter may not be able to afford to go to university and pursue higher learning or take a few years off to travel the world and discover what her passions are. The cost of diabetes may force her daughter to choose a sensible job that offers benefits, in order to support herself and cover the cost of having type one diabetes.
Knowing that there is a cure in sight is so promising to all of us who live with type one diabetes, and yet this cure cannot come fast enough. Dreams sometimes get put on hold; siblings sometimes are required to live without so that the child with type one diabetes has what they need to survive. The financial burden of living with type one diabetes permeates every single person and choice within the family structure. A cure means lifting both the heavy financial and emotional burden of care from both the parent’s and eventually child’s shoulders.
It means living a life untethered by disease, lifting away the constant worry about death or health complications that can come from this disease … it means freedom and joy to pursue life to the fullest.