It was recently that time of year again…time to clean out our diabetes supplies. What once was able to fit in a drawer was now taking up a drawer, a roll-out tote, and underneath of my youngest son’s bed. This had to stop. I had no clue that he had supplies hidden in all of these places and was no longer sure as to what supplies we had and what we needed.
We found boxes of Cozmo reservoirs, a few different types of infusion sets, his very first meter, a Polar bear meter holder, way too many lancing devices and enough lancets to keep him going until he is 100. We also found test strips that were about to expire. There was no way I was going to waste these strips. This was $100 and many people can’t even afford to buy them. The strips would be used at home until such time as they were gone.
My son was fine with that. Like his mother, he loves trying out new meters. This meter was far from new but since he hadn’t used it in a few years, it was new to him again. The novelty quickly wore off.
“Mom, this meter takes FOREVER to read!”
“How long is forever?”
“15 seconds! Can you believe that? This is crazy!”
I started to laugh! My son was far to used to the immediate gratification found after a five second countdown. He did not remember the days of his first meter. Thirty seconds seemed like an eternity and yet I remember back then knowing how lucky we were, the previous generation of meters had taken 60 seconds to show results.
Despite the “long” wait, he continued to use the old strips. A few lows and bad sites meant that it did not take more than a few weekends for the 100 test strips to be used up. I must admit that I had been spoiled too. A few nights of having to wait for those extra 10 seconds did seem like forever. Nonetheless, it still was not as long as waiting 30 seconds and wondering if your toddler was asleep because he was tired or passed out from a low.
I love technology!
Yesterday I went to the pharmacy to order diabetes supplies. After an initial heart attack when the woman suggested that there was no prescription for one item that I needed for my son, all went well. When I went back to pick up all of our goodies, the woman at the counter knew our name. As she tallied up our bill, she hid the screen and said “You don’t want to see this.” She was right–over $600 spent and that did not include pump supplies. $100 of it was mine but the rest was all to manage diabetes.
The glucagon kits, that we thankfully have never used (looking for wood to knock on), were over $235 for two. I am so grateful that they have never been used but was terrified for the families who need it but don’t have the insurance to cover the cost. We are lucky. My son’s drugs are covered by his father’s plan. I pray my son will have a good drug plan on his own one day or I don’t know how he will make it.
$500 for insulin, test strips and glucagon. There was nothing extravagant in that list. There were no syringes or pump supplies. I did not order six months worth of insulin and there are only enough strips there to last 15 days (give or take a few). That is equal to our grocery bill for a month. That is rent for a small apartment in some places. That is the amount of our electricity bill to heat our house during the winter. That is also the amount of money required to keep my son alive for approximately two weeks–scary!
My heart breaks for those who do not have health insurance. Anxiety attacks occur when I think of the fact that my son will have to carefully consider his employment future. He knows what he wants to do with his life but at almost 14, I know that he has not looked to see if that career would give him good benefits. Benefits are not something that kids should have to worry about. Then again, injecting something into their system on a daily basis to stay alive is not something a child should have to worry about either.
Our province does offer a low income and middle income drug plan. This will cover some but not all of his supplies if he needed. He would be limited in the number of test strips he could purchase. He would require special permission to have his insulin covered. His pump supplies are covered until he turns 25. This all changes if he decides to live elsewhere in the country.
I know that there are other countries that have it a lot worse. We don’t live in those other countries though. We live in a rich country. We live in a place with socialized health care. Despite that fact, people with diabetes and other illnesses, must fight to obtain access to devices and supplies. They cannot chose to have the very best in care unless they also have the very best in insurance plans or bank accounts.
People say that diabetes does not stop you from doing anything but it does limit your career choices. We have made some inroads. There are pilots with Type 1 diabetes and people working as police officers who are living with this disease. In reality, diabetes has a huge impact on career choices. If you live with diabetes AND you want tight control, you have to be able to afford it. The easiest way to do that is to have a great job with even better benefits.
That needs to change. I am not sure how but it needs to change. For the time being, we can work on having insulin pumps covered for everyone regardless of age. The next step will be to have an insurance program that covers everyone regardless of income and despite an existing condition. If you make $100,000 a year then perhaps you can afford a $5000 a year deductible but if you make $25,000 a year then lets be able to offer them $750 a year. Its something to think about. Its something to work towards…
This morning I read a blog post about a woman whose perspective was shifted when she met a homeless young man who was begging for insulin. She commented on how sad it was to live in a society where a person was not begging for money for drugs or alcohol but having to beg for the life saving liquid that he required to flow through his system just to keep him alive.
A few hours after reading this, I received an email from a woman who need help funding an insulin pump. The coverage that she was sure she had did not icover someone of her age (over 18). She desperately needs a pump but, like so many, cannot afford to purchase it and the supplies herself. She was curious to know if I was aware of any compassionate programs that could help her out. Unfortunately I don’t.
These two things brought me back to the ugly reality of diabetes–it remains a disease for the rich. That sounds crazy because we know that diabetes does not care how big your bank account is. It really doesn’t care what type of car you drive, where you work, or how much money your grandmother left you in her will. Diabetes does not care if you are young or old. Diabetes just happens and we somehow learn to live with it.
The sad reality is that some of us can live with it more easily than others. Years ago I wrote about the reality smack I received one Christmas. I spoke with a friend who had been able to get some test strips to help a family who had a child with diabetes and no insurance coverage. Two hundred test strips meant the world to this family and would free up $200 for them to buy gifts for their children. I had spent that amount of money on one child without a thought and without having to worry about my son having enough diabetes supplies.
I live in a place that will cover most of my son’s supplies including his insulin pump until he is 25 years old. That is something that I value because I have no insurance coverage and all of my son’s pump supplies would have to be paid out of pocket if I lived in many other areas of Canada. The fact that we are lucky to live here also presents another glaring fact, because we are not amongst those who can “afford” diabetes, we are restricted in where we live in order to have the best of care.
If we lived in Ontario, my son would have all of his diabetes costs covered and I have heard we could even consider putting him on a Continuous Glucose System without having to cover any of the cost. If we moved to New Brunswick, my son would have no coverage at all and if we moved to British Columbia he would have some coverage. I have no plans of moving anywhere but am pained that, in Canada, as with the rest of the world, if you have diabetes your ability to receive the best treatment options depend on where you live…or the size of your bank account.
If you can afford the insulin, the test strips, the glucagon kit, the insulin resevoirs, infusion sets, pump, CGMS, and sensors then you can efficiently manage your diabetes to the very best of your ability. I am not saying that this will guarentee you the best control, but you will have the best tools to help you be the best artificial pancreas you can be. If you have to pay for your “new” insulin (be it rapid acting or long-lasting) because your province’s formulary only covers things like Regular insulin and NPH then you have to watch your insulin consumption a bit more. If you have to pay for your own infusion sets then you want to cry each time sweat or rough play causes a site to fall out before at least reaching day three of use. If you have to pay for your own CGMS then you pray with each sensor that it will last and continue to provide data well after the supposed expiration date.
The items I have listed above are not luxuries. Its not about having a Hyundai Accent versus a Jaguar. These items keep our loved ones with diabetes alive, healthy…and ultimately active and productive members of the tax paying community. We have made huge strides in the past ten years regarding improved access to medical supplies and devices. I pray for the sake of my son and so many other people’s children that we make bigger leaps towards seeing no inequity regarding medical coverage in the future.
You may have noticed through different posts, that we have moved over the summer. My amazing relationship with my favorite pharmacy has had to come to an end and I am now in quest of a new and at least civil relationship with a new group.
I have learned that if I am going to survive waiting for the money to come in from my ex-husband to cover the supplies I buy, I have to be much more organized and not stock-pile as much as we once did. Well, unless I stockpile in a monthly purchase! Seriously, I am most likely going to have to send him the receipts on a regular basis (the pharmacy did offer an alternative but I don’t know if he will go for that one or not). To reduce my own debt load while waiting to be paid, it makes more sense for me to learn how many test strips, etc he uses in a month and going in and buying the works at one time. That will be so difficult–being organized and living with diabetes? Can people really do this?
As I have said before, I am easily distracted and in the pharmacy is no different. While waiting for them to bleed my wallet once again I saw it! I have been drooling over the ads and wondering what it would be like to use for months. I have tried to see if I could find a way to get a free one considering how many test strips we use but no way. I saw the price tag and my drool dried up as I thought…that is a box of strips Bud!
What was torturing me so? The new USB Contour. I am a meter junky. I have to try them all. I have yet to find one that I truly love. I have passed the addiction on to my son. If he had been there he would have been begging me to get it. When we spend over $500 on test strips each month, I really can’t justify another $100 for a meter just to see if we like it. My son does love his Contour—the regular one that is. Personally I am not that fussy over it but I do most of my testing at night so my scale is different that his. Oh well, I will keep dreaming and wait until the decide to give them to those of us who use so many strips.
In the meantime, I will just try to black out the pain my wallet keeps feeling each time I walk through those lovely pharmacy doors and pretend that my wallet is only red because I love the color.