Over the past few weeks I have received a number of emails from frustrated parents. Their children are moving onto post-secondary school and have reached the magic age of 18. Their pump coverage, if there ever was any, is ending and the parents are at their wits end. They fear the high costs associated with pumping will mean that their children will have to use a less effective method of managing their diabetes.
Why does coverage end at 18? Yes, diagnosis usually happens before 18 but why end coverage at that point? The disease didn't stop. They still need a pump, insulin and supplies. Why is this happening? Why aren't more provinces covering pumps? What is going on?
Those are just some of the questions and frustrations that I hear. I truly feel for all of these parents. When my son received his first pump, it was given out of love. We were at a family reunion and my son was on multiple daily injections. He ate at specific times--which did not mesh with the times that the rest of the family was eating. He often sat alone. It was heartbreaking. They had heard me talk about an insulin pump and decided to pool their money so that he could have one. I cried a lot that day. The memory still makes my eyes fill with tears.
His pump supplies came in a no less emotional way. I wondered how we would pay for them. An extra $200+ per month in a single income family would not be an easy burden but my son's health was at stake. A friend knew of our plight. She had extra supplies and made sure to share with us. She found others who were switching pumps and no longer needed their supplies. They were sent to us as well. It was a true blessing that we were later able to share with someone else.
A few months before my son's pump warranty was to expire, our advocacy efforts paid off once more and the province that we live in stated that they would cover insulin pumps for children up to age 18. This was a victory. We now had the first bite out of the cookie but the rest of it was still out there. With a lot more hard work, letter writing and educating, we were able to add young adults up to the age of 25. The final piece will be to get all adults covered and that must still be done.
Back to the original question though--why 18? I think its completely political. A small child with a pump looks good on the government who provides it. Can you imagine depriving a three year old of a piece of medical equipment? Now look at the image of an adult with a pump. The adult can get a job. They can pay for their own pump. Why should everyone else pay for them? They can live without a pump. Injections keep them alive and if they would go out and get a real job they would have their own insurance that would cover luxuries like a pump.
Okay that was pretty crass but sadly some people will view it that way. As a person who has advocated from pumps for all ages, I tend to try to spin things in a different way. Many adults will have jobs that provide them with the insurance to cover their pumps. Even more adults with Type 1 diabetes would have the opportunity to be in the workforce if they had a better method of insulin delivery through access to an insulin pump. The number of adults who require pumps and do not have insurance is relatively small but their choice of occupation or employer should not dictate if they can use an insulin pump or not.
When my son talks of a career, my mind quickly turns to "what sort of benefits will that job come with? How will you afford to cover your supplies?" I hate that. Why should my son be limited by a disease that costs so much to take care of?
So to answer the question, why does coverage end at age 18? Because we still have to educate the public and those in government who control the purse strings why continuing pump coverage makes financial sense. We have to teach them that the small outlay of cash to maintain the program throughout the life of the person with diabetes will mean that these same people can be productive members of the workforce for longer and have a lower chance of being a burden on the health care system because of complications.
To the question, when will our province provide any coverage? The answer has some of the same components as the last one...when we educate them. When we make them understand that the benefits far outweigh the costs. Only then will we see improved coverage.
People are working on this and have been for years. We need more people working together. We need our voice to be stronger...and it will!