The other day Liam told me that he had made a new years resolution. I asked what it was. He said to have better control of his diabetes--test more often, pre-bolus and more readings in range. My heart cracked just a little more. I was proud that he was at least talking the talk but I was scared that with puberty the focus on "readings" would lead to some disappointment.
It killed me a little more to know that there was a tool out there that could help him with this. It would give us more data and let us know what was going on when he wasn't testing but I had decided against purchasing it. Continuous Glucose Monitors continue to be much more popular than days of old. They are much smaller and much more convenient than ever before. Unfortunately they are not covered by the provincial insulin pump program, nor are they covered by Liam's father's medical insurance. His parents would have to pay for the system and then the monthly supplies. With braces to be paid for and a family vacation in the works, there is just nothing left for such extras as a CGMS.
Once again diabetes care is reduced to dollars and cents. It becomes about using the tools you can afford not using the tools that would best manage your care but we are more fortunate than a lot of others. Most adults living with diabetes still do not have government assisted insulin pump programs to lean on. They are stuck having to use injections or cover the cost of insulin pump therapy out of their own pockets. Even for those with insurance there is often "caps". We ran into a cap the other day for test strips. Liam used up more than the allotted $1400 worth of test strips...no kidding we test 10-12 times per day. I couldn't believe a program would be so limiting but for many that low cap is found on all of their diabetes care supplies.
This kills me. This could be my son in a few years. I am already telling him that he has to look at his employment options in terms of what job will give him the best benefits. That is insane. Its not about what you want to do, its about what will either pay the most or offer the most.
All of this was in my mind the other day as I went to one of the first pre-budget consultations in our province. I had a person who was willing to stand forward and speak to the need for an adult insulin pump program in our province. We were slightly misinformed regarding how the process worked and what we should present. We did get our message out there and were supported by another minister at the table but I still left there wondering if any messages were getting out there. Were people permanently clueless about diabetes?
After the presentation, one of the assistants to the Minister of Finance spoke up and said that some pump supplies were in fact covered for those over 18. The presenter pressed the man to say what supplies were covered but he could not answer her. I was shocked as our diabetes clinic was looking to receive funds from the Diabetes Hope Foundation to help young adults. They surely should have known if there was a provincial program and wouldn't look to private funding. I could not let this sit. The assistants are known to have a lot of power when it comes to getting things done as they tend to sit in the departments for longer than Ministers. I had to make sure that this guy had his facts correct.
I went up to him after the meeting and explained who I was. I asked him what pump supplies were covered. He said that while the pump wasn't covered, test strips were. And???? Well it turns out that was it. Test strips could be covered under the provincial drug plan for qualified users. Okay but that helps all people living with diabetes whether they are on insulin, medication or diet and exercise. It does not help someone to maintain their insulin pump. He had no idea. I was scared. This was one of the people involved in deciding on if we should have funding and he doesn't have a clue about what we are talking about.
The plus side is that there are a few more public meetings available for people to set them straight. The downside is trying to find people to speak out, to take an afternoon or morning of their time and spend it in one of these forums. It is trying to get people to write emails and contact the panel to let them know that this is important and why. Please, if you can help us to help the adults with diabetes in Newfoundland and Labrador. With the right tools and knowledge anything is possible. Even Liam's goal of better readings. He has already dropped his A1c by .6% and has a very proud mom.