The DexCom has Come To Town

It’s in the house. He is willing to try. Momma is quietly dancing inside hoping for the very best.

What is it? It’s a DexCom, given to us to try by our fabulous Animas rep.  She dropped it off to me with instructions last week. It sits reverently on top of my son’s dresser waiting for him to come home to try it out. I am nervous and excited.

For years I have wanted my son to use a CGM.  I could see how it would make nights so much easier. I could see where it would help him during the day. The thought of seeing a 5mmol and actually knowing if this was a good reading or one that would drop dangerously low has been just too much for this momma bear to hope for.

My son on the other hand has never had any interest in a CGM. He doesn’t care what Mom says.  He has not been bothered by T1 people telling him how much he would love it. To him it has been an extra thing to wear and carry. It was a burden not worth his time.

What has changed? I am not sure. He is a bit older. He is looking at his future in the workforce. He has been dealing with his own care and his own doctor appointments for the past year.  Perhaps the combination has brought him to a point where he is at least willing to give something new a try. I don’t know but I am so happy…and so scared.

What if he does like it? What if he wants to move forward with purchasing one? How will I afford it? How will he? Will he end up working for a company that will cover a CGM and his pump supplies? If he doesn’t, will he make enough money to be able to cover this cost on his own? Will we be able to convince the provincial government of both the long and short-term value of sensor augmented insulin pumps?

dexcom
Its here!

There are so many questions and so few answers.  For now I will focus on one thing–in a bedroom, in our house is a device that will change how we see my son’s blood glucose readings for one week over Christmas.  That device will offer us a window into a world that we had never had more than a glimpse of in the past.  It is the key to better control and perhaps even a bit more freedom for my son. It’s not a cure but fourteen years ago, I could only hope for another tool in this fight to keep my son healthy.  Soon we get to see if it’s a fit for him.

Test Strips. How many is enough?

Recently the BC government announced that they would be restricting the number of test strips that they covered for people with diabetes.  Those using insulin would only receive 3000 test strips per 365 days.  Those who did not use insulin would be given significantly less.

BC is not the first province to do this.  The table below shows that there are very few provinces offering strip coverage that truly matches the needs of individuals with diabetes.

Province Coverage for those on insulin
Alberta 700 strips for 100 days (2555 per year)
Manitoba 500 strips for 100 days (1825 per year)
Ontario 3000 per year
Quebec Limited to the amount prescribed
Saskatchewan Ongoing coverage
New Brunswick 50, 100, or individualized number of strips per year depending on diabetes regimen
Nova Scotia Limited to the amount prescribed
Newfoundland 2500 per year
Prince Edward Island 1200 per year

What does this mean? Are we simply too greedy? Do we want our provincial governments to cover too much? Are we testing too often? 3000 test strips is a little over 8 tests per day.  Shouldn’t that be enough?

My son ideally tests before each meal, two hours after every bolus, before and after exercise, before bed, and at least once during the night. He has used up his eight test strips before he has done his regular work out or retested after a low.  He does not have any strips to spare if there is a strip error.  He also doesn’t have anything extra for sick days when we know that a person will go through a ridiculous amount of strips thanks to highs, ketones, and vomiting.

I read somewhere that the idea behind these restrictions was to help make people think a bit more before they test.  We don’t want them to just be testing willy-nilly and wasting strips.  That made no sense to me.  Why does someone willingly want to lance their finger for the fun of it? Yes, some people without diabetes like to do this to make sure that their blood glucose levels are in check but why would a person with diabetes whose finger tips already are a mess of black dots and scars want to poke themselves just for giggles?  They won’t!

My son is 17.  He tests when he has to and absolutely no more.  He tests when he feels that his blood glucose is on a fast rise or fall. He tests when he knows that something is off in his body and it needs his immediate attention.  It is never something done for fun.  It is done to keep him alive, healthy and productive.

Why is it such a big deal for people to have their test strips covered? Why should tax payers care about covering the cost of test strips for people with diabetes who do not have private insurance? Because the cost of not helping them is far too high.

If people with diabetes are not testing their blood glucose levels, they are not able to note consistent highs or even lows that will silently damage their bodies.  They will not feel as healthy and they will  begin to miss more days of work. Over time they will develop complications that will completely take them out of the workforce and put a huge drain on the health care system.

4500 test strips per year for example would equate to testing just over 12 times per day.  That would be an extra $1050-1500 per year for those individuals who max out their test strip limit. Compare that amount to $263,000 per year that governments pay for hemodialysis which can result from poor diabetes control. Sadly, too many of provincial governments do not see the long term.  They see the possible $1500 per person per year that they are saving and stop there.  They are not concerned with the drain on the health care system in 5 or 10 years down the road.  They won’t be in office then and it will be someone else’s problem.

This thinking needs to change.  It is not just about the health concerns that they are creating for tomorrow by failing to properly care for people living with diabetes today. It is also about the money that they are losing from these individuals today.  People living with diabetes can lead very full and productive lives. They can be doctors, lawyers, plumbers, and mechanics.  There is very little that they cannot do when they are able to avail of the tools that help them to regulate their blood glucose levels properly.

When these individuals do not have the proper tools they miss time from work or may even have to remove themselves from the labour market.  They require the assistance of more government services rather than helping to pay for them.  Keep people living with diabetes healthy is to the benefit of everyone in society.  The reward in quality of life, longevity, and productivity far outweighs the cost of a few thousand dollars each year.

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*table is compiled from data found on provincial websites and http://www.chspr.ubc.ca/sites/default/files/publication_files/Test%20Strips%20in%20BC%202014_0.pdf

What a wonderful community to have to be in!

When my son was diagnosed with Type 1 diabetes it was one of the darkest times of my life. I was scared. I felt terribly alone. I didn’t know what was happening or how we would cope.  I was overwhelmed and unsure.

I left the hospital terrified that I would  somehow do this wrong. I eventually called a lady whose daughter was diagnosed the month before my son. Her little girl was a bit younger than my son but we had a lot in common.  We lived in different communities however and it would take years before we actually met face to face and become good friends.

In the meantime, I struggled. I stumbled. I am sure I made mistakes. I tried. I cried alone in the dark at night not sure of how I would make it through but grateful that my son was alive and knowing that failing or stopping was not an option. I had a job to do and somehow I would do it.

My son’s diagnosis happened  in the beginning of the  year 2000.  We had survived the Y2K scare only to land in a new nightmare.  We had a computer but this thing called the “internet” was interesting but new to us.  With prodding from my mom that it would make keeping in touch with family easier, I finally broke down and ordered our first dial-up service.

After a bit of playing around, I stumbled across this place simply called “children with diabetes“.  In a few more keystrokes, I was hooked up to a group of strangers who would come to know more about me over time than many of my own family.  They would be there in the dark of night and share the brightest of days.

Over the years we would share our personal lives as well as the highs and lows of diabetes life. We would talk treatment options and share opinions.  We would get together in real life and instantly share hugs, meals and a warmth to be found nowhere else.

For me this was the beginning of my exposure to the Diabetes Online Community.  It was a place where we, as parents, could share and learn.  We moved past the awkwardness of telling the people around us about our “online family” that we have never met in real life.  We knew just how real this online family was and how strong the bond was. We knew that they were there for us no matter what.

Today, this online community has grown.  The advent of Facebook and Twitter has expanded the community.  We have been able to come together with more adults living with Type 1 diabetes and those with Type 2 diabetes.  The bond and the generosity has someone managed to equally grow.

I have seen the Diabetes Online Community (DOC) reach out to help people who have run out of test strips. I have watched as they have helped to raise funds for families who were out of work and just needed a little help to cover their light bill this month.  I have seen money raised to help a family struggling through the loss of the prime income earner due to terminal illness.  I have seen them jump to the aid of members who have lost everything due to fire.  There is no boundaries to the help they will provide and no borders stopping the support.

The support is not always about money. It’s not always about a cyber shoulder to lean on.  The support can also come in technology.  The community has always been a breeding ground for innovation. From the early days of creating a headlight for parents who were doing night tests to the most recent creation of the “Night Scout” for parents who wish to have access to CGM data through cloud technology. It is amazing.

While I am fortunate not to have had a lot of illness in my family, I remain forever grateful to have landed in a community that contains the most generous and true friends that a person could ever ask for.  A place filled with family. Family picture