Category Archives: funding

Now I know why I worry

As usual, I was going through articles this morning looking for new research results and other  new and exciting things in the wonderful world of diabetes.  For some reason lately, there have been quite a few articles on Dead in Bed Syndrom.  I think its because I am trying to get my son to begin to wake up to alarms, lows, and work a little more on his own care. Okay, maybe its not personal and its just coincidence but it did make me wonder.

Today’s article did more than just make me wonder, it made my heart stop.  I remember way back when my son was first diagnosed. I read everything that the hospital gave me and then read it again. In the literature there was a brief pamphlet on Dead in Bed.  They suggested that a person with diabetes could go low in their sleep and never wake up.  My first thought was…I will never, ever sleep through the night again and I have lived by that for over ten years.

I automatically wake up now.  There are no 3 am alarms set for me.  I wake to use the washroom. I wake to strange sounds. I wake to odd dreams.  All of these things are reasons for me to stop in my child’s room and verify that his blood glucose reading is okay.  On more than one occasion it hasn’t been and I have thanked the moon, the stars, and anyone who got me up that night to catch the problem before it got a lot worse.

When I read the article this morning I realized that people who think I am crazy for getting up so often have no idea and that I am right.  Many who question my actions do so out of concern.  The physical toll it has taken on my body is evident by the medications that greet me at breakfast each day.  Its because of this and the fact that my chid is not with me 24/7 anymore that I have really worked this summer to get him to wake up to an alarm and test himself. I still wake up and check his meter or test him again but he is managing to wake up at least 50% of the time and test.  This is huge for a child who can sleep through a fire alarm!

So what was the big scare factor in the article? What validated me and sent me back to testing like a maniac? A MedLinx article that stated “The incidence of “dead in bed” syndrome is not known but studies suggest figures of between 4.7 and 27.3% of all unexplained deaths in type 1 DM.”  Five to TWENTY EIGHT percent????  That is beyond unacceptable.  That is downright terrifying!
Its funny, we have worked so hard to get out kids pumps (and in some places the fight still continues) and now it looks like we will need to bring this information forward to help us ensure that we can at least have the help found in CGM technology.  None of it is a cure but we want our loved ones to live long enough to see a cure. 

Back to the Grind

January 2010. Where did the time go? I know its a question we ask every year. You would think that we would have the answer by now! Well I don’t have the answer to that question but I do have another question that has been asked before that I will be asking again in 2010…Premier Williams, please, please, please expand our provincial insulin pump program to include those over 18 years of age!!!

Yes, its that time of year again! Its time to roll up our sleeves, bring out our dialing fingers and our typing hands and get back to work. Last year we asked for pumps for adults. We asked that the Newfoundland and Labrador government follow in the path of the Ontario government. Ontario had become a “have not” province and yet still manages to fund insulin pumps for all of its citizens living with diabetes despite age. Newfoundland and Labrador declared itself to be a “have” province and yet new hospital parking lots took precedence over an adult insulin pump program. Now I have tried to park in some hospital lots and I will agree that there can be huge problems there but the reality of 18 year old men and women having to remove their insulin pumps because they cannot afford the supplies is personally a much more grave concern. Parking is an inconvenience. Insulin pump therapy and the benefits it provides has a direct impact on the provincial economy and its spending.

Individuals who are able to tightly manage their diabetes are less likely to end up in the hospital with emergencies blood glucose issues. Individuals who use an insulin pump can more easily handle jobs that involve shift work and therefore can be tax paying members of society. Individuals with diabetes who are able to maintain their treatment method after they turn 18 have less reason to leave the province to seek employment. They can stay home, work in their local economy and still afford to live. In a province that has seen record out migration for longer than it has seen in-migration, you would think that this would be a win-win proposition.

This program is not a costly one. Many adults living with Type 1 diabetes in Newfoundland and Labrador will already have some sort of pump coverage. Adults who were not transitioned to a pump as youth will often be reluctant to start on “new” therapies. Last year’s estimates suggested that a four year pump program, including pumps and supplies for adults without any pump coverage (not including man hours) would cost the government approximately $2million. What is $2 million when compared to helping thousands of adults living in Newfoundland and Labrador?

At the moment, the reality is that young adults who turn 18 and go into the workforce or who have parents without insulin pump coverage are often forced to rely on donations or return to injections. This is not acceptable. Please help us to make the government aware. Let us know if you can help emailing MHAs, calling and getting the word out at pre-budget consultations and more. Lets make the 2010 budget be a budget that will assist those living with diabetes in Newfoundland and Labrador.