Age Shouldn't Matter

Last week, during blog week, I told you about things that get my dander up and make me want to scream from the roof tops until they are fixed. One of those things was access to insulin pumps and supplies. Since the day that I realized that there were more options available to my son than the insulin regimen we were currently on, I was adamant that all people with diabetes should have choice in their treatment options.

People living with diabetes should be able to decide if they want to use Lantus over NPH. They should be able to choose Apirdra over regular insulin.  They should be able to see if a Continuous Glucose Monitor or an insulin pump is for them without having to sell their home. That sounds extreme doesn’t it? Sadly it isn’t.  Despite living in Canada with its socialized medicine, Canadians are still not always able to access the best treatment options for them.  They may not have private health insurance or their insurance may not cover the devices that they desire to use.  The result is that they go without or go to extreme measures to get the medical tools that they desire to keep them healthy. For me, that is not acceptable.

My son began using an insulin pump 11 years ago.  I had wanted a pump for him since the first time I heard of the flexibility that it allowed but financially it was not an option.  His father had medical insurance but insulin pumps were not covered. What changed 11 years ago? My family stepped in and said that they would come together to pay for the pump.  They wanted the very best for my son.  It is a moment that I will never forget.

Over time things have changed thankfully. Provinces have begun to cover insulin pumps–for children.  Those over 18 have had to find good insurance, high paying jobs, go back to injections out of necessity rather than choice or move to Ontario (the first province to cover all people with Type 1 diabetes who wished to use insulin pump therapy).  In my own province of Newfoundland and Labrador, changes have been made as well, the age limit for assistance was moved to 25.

Today my son is 16.  He is heading into his final year of high school and looking at career options. The most important part of his career choice is to find one that is either very high paying or offers great benefits. What he enjoys seems to be second on our list. That is discouraging and gets my dander up.

If a person wishes to use an insulin pump to best control their diabetes care, then they should have that option.  Age, financial status, or occupation should not dictate what type of therapy they can receive.  With this in mind, advocates in provinces like British Columbia have created petitions to ask their government to expand coverage and remove age restrictions. Pensioners are having to go back to injections because their private health care coverage ends at retirement.  Young adults who are beginning careers and new families are having to rethink how they will move forward because of cost constraints brought on by managing their diabetes care
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This is not right.  Age should not dictate whether you get an insulin pump or not.  Insulin pumps provide just as many benefits to adults as it does to children.  Adults with type 1 diabetes who are using insulin pumps often find shift work much more manageable.  They tend to see less diabetes related down time because they can micro manage their disease with greater ease.  The addition of Continuous Glucose Monitoring systems to their care can help them to anticipate dangerous highs or lows that could have otherwise sent them home for the day.  Increased productivity and work time for people with diabetes has a larger impact on society as well. People living with diabetes who are able to work are able to contribute to the provincial tax coffers through their employable earnings.  They are less likely to have complications or dangerous blood glucose swings that could send them to the hospital.  Our young people with diabetes are able to look at jobs in the province rather than having to move to areas with better pay and better benefits.

The rewards definitely outweigh the costs to the provincial governments and our health care systems. With this in mind, I have created a petition that will ultimately be presented to the government of Newfoundland and Labrador asking that they expand their insulin pump program.

Please consider signing and sharing this petition.  The more voices we have, the stronger we are.  This is a very serious and real issue.  The stories and needs behind the petition are heart breaking.  I have spoken to a government employee who have had to rent out her homes so that she can have extra money to be able to afford her diabetes supplies.  I have listened to medical personnel who have had to rely on financial help from a life partner in order to continue pumping.  I have sat down with members of the police services who pay the equivalent of an extra car payment each month just to keep themselves pumping and healthy.  There are also people who are in minimum wage jobs who have no choice but return to injections after they turn 25 because they just can’t afford to pay for their rent and their insulin pump.

This needs to change. With your help it will. Please support this initiative for all of those who choose to use an insulin pump.

Three Things that Raise My Dander

Its Diabetes Blog week once again and I am so excited to be able to participate once again!  Today’s topic comes for Kim of Texting my Pancreas and asks us to discuss diabetes issues that get us really fired up!

Since I began my website many years ago, the issues that I have been passionate about have grown but have always retained one common thread–improving the lives of people living with diabetes.  There have been some successes and there is still a long way to go but watching the diabetes community come together and create change has been the best part of the journey.

The first issue that got my dander up was the inequity I saw years ago in the way people with diabetes were treated when it came to the Disability Tax Credit.  As I worked on this issue, I saw that those who were approved for the credit were people who were able to stand up to the government and were willing to fight for this issue. If you were uncertain or did not know how to take on this battle, you would be denied the credit while your neighbor was approved.  There seemed to be no other logic behind how this credit was applied to people living with diabetes.
With a lot of help from other people living with diabetes and a fabulous mentor, I was able to see this issue change dramatically. Fairness was obtained and change happened to the legislation surrounding this issue. I was very proud of all the works that was done here but there were still more issues to tackle.

As I learned about diabetes and became more involved in the world of advocacy, I came to realize how difficult it was to get an insulin pump if you didn’t have the very best insurance coverage.  Once again I was outraged.  Why should it matter what sort of job you have or where you work to get the best possible care for your diabetes?

Since I first began dealing with this issue, things have changed.  Most provinces in Canada now offer provincial health care coverage for insulin pumps and supplies for all children under the age of 18.  That was great but what about older children who are just starting out in the workforce? Some provinces decided to give these young adults until age 25 to get better insurance…some provinces didn’t.  Today, I continue to work with others to see that all people living with diabetes have access to the best devices available to manage their diabetes care regardless of age. This means that I would like all governments to cover insulin pumps, supplies and Continuous Glucose Monitors for people with diabetes regardless of age.  This will happen in time. I am confident.

No matter what your age or where you live, you deserve access to the very best in medical care.  It is important for governments (and insurance companies) to understand the broad sweeping benefits that come from best care practices. If a person with diabetes is able to maintain their bg control to a close to normal range and they are able to anticipate highs and lows with the aid of CGM technology they are better able to perform at work (which means less down time and more money paid to the government in terms of personal tax), they are less likely to be in the hospital (costing the government money), and more likely to have a better overall life satisfaction which in turn further leads to increased productivity and once again an increase in taxes paid to governments. The cost outlay is far outweighed by the benefits to the system as a whole.

At the moment, I live in a province that covers insulin pumps for people with Type 1 diabetes until they reach the age of 25. It does not cover CGM technology.  I have less than 9 years to advocate for increased funding to cover all people with diabetes regardless of age.  In 9 years my own son will be in the position of having to make very serious and real choices about his diabetes care. We will see this change–for him and for all of the other adults struggling to maintain their health despite the heavy financial costs.

Because my son is still in school and has had diabetes since before he went to school, the third issue that I am passionate about is that of children with diabetes in schools. This issue has seen major changes since I first began talking about it over 10 years ago.  In BC, we have seen the power of grassroots parent organizations who have pressured the government into changing its policy on children with diabetes in schools.  I have seen many more individual boards and provinces begin to seriously look at the issue of protecting the rights of children with diabetes in schools.

Once again, this is an issue that many parents and children are not able to stand up and voice their concerns about themselves. I felt that it was therefore my job to help them.  I would (and do) speak to parents on how best to tackle their schools and their issues. I work with boards to help them understand what needs to be done to create change that is fair and just to all parties involved. This is a very complex issue here in Canada. Our children are not protected by a disabilities act. They are protected by the voices of their parents and other concerned adults…but these voices are powerful and making a difference.

Advocacy has always been something that I am very passionate about. I have felt a strong need to stand up for those who may not be able to stand up for themselves.  I have worked for the past 14 years to ensure that people living with diabetes are all treated fairly with equal access to education, medical devices and supplies.  This is a long road.  It has seen many battles won and I am proud to be able to continue fighting the war along side many incredible people.

BC Takes Another Step Forward

Last night I returned from an evening out to see all sorts of posts about an announcement from the BC government.  They have decided to expand their insulin pump program to include young adults up to age 25.  This is fabulous news! No longer will young adults entering the workforce have to turn off their pumps at age 18.

 

This is not however the final battle in this war however.  There are still people over 25 who desperately need the help of their provincial medical plan to cover their insulin pump expenses. This is a fight that we will all continue until everyone living with diabetes in Canada  who require an insulin pump but cannot afford to pay for one, will have access to one.

 

In BC, the driving force behind the recent change is not happy to sit and savor this latest victory.  She is asking that people in British Columbia “please write the Hon. Minister Terry Lake and tell him that funding insulin pumps up to age 25 is NOT GOOD ENOUGH. I am begging all of my friends from BC to even just write a short email saying that we need pump funding for all ages of people living with TYPE ONE DIABETES with no age restrictions for people without extended health benefits to pay for them. It could be your family member that is in need of this life saving device. He needs to know that this is unacceptable. Please send it to terry.lake.mla@leg.bc.ca and carbon copy to  hlth.health@gov.bc.ca, judy.darcy.mla@leg.bc.ca (NDP health critic), your MLA and the premier premier@gov.bc.ca .”

 

Congratulations to BC advocates for getting to this point!  Good luck to advocates across Canada who seek to have their provinces follow the example of the Ontario government and fund ALL insulin pumps for people living with diabetes.  This is a moment to savor…and then move forward in a war that we will win for everyone with diabetes in Canada who wishes to use an insulin pump.

 

 

 

 

 

Details of insulin pump coverage by province can be found at http://diabetesadvocacy.com/pump_coverage.htm

Go Ahead and Complain

The other week I noticed nothing but customer service complaints filling my Facebook news feed. I was shocked and wondered if there was something in the wind.  It didn’t matter if someone was in a restaurant or dealing with their cell phone, they were having issues with horrific customer service. Sadly, this made me feel better when I began to have my own issues.

My son’s glucometer was having issues. It was eating batteries with astonishing speed. It had reached a point where he was no longer using it much to my dismay.  This is the meter that “talks” to his pump and gives me a true idea of his bg levels each week when we review things.

I called the customer support number and so began my run around. It appears, in a review of my situation later, that every crack that I could fall through I did! It was terribly frustrating but it also reminded me of a few things.

First is how important our pharmaceutical reps can be when we have problems.  After asking around and finding out that the service I was receiving was extremely unusual, I contacted my rep to see if she could be of any assistance.  She was horrified!  She apologized and was instantly looking for any and all help that she could get for me.  She did not stop until things were resolved.  I loved this lady before she became my son’s pump rep and now I truly love how she goes above and beyond for her customers.

Secondly was how those annoying spiels about how they are recording your conversations actually have a benefit to the customer. If you know exactly when you called and you feel that you were not treated properly, management can pull up the call and see what has happened.  In my case, I was treated fine, my issue just got lost in many transitions.  I have however received horrible service from a person on the phone with a different glucometer years ago.  The woman told me that the problem with my meter’s accuracy was related to me having dirty towels that my son was drying his hands on.  To say I was insulted was an understatement.  Later follow-up resolved that issue and the woman was re-educated.

Customer service is huge for those of us who’s lives, or children’s lives, depend on medical equipment.  Personally, I have met many people in the industry from all over North America.  They all genuinely want to help.  “Stuff” does happen.  Mistakes can be made but I have also learned that these same companies want to learn from their mistakes.  Let your reps know if you have issues.  They want to fix things for you. They want you to be healthy and satisfied with their products. That’s good for everyone.

The Pumpin Patch

In honor of wordless Wednesday....

The Changing of the Pump

We finally did it...and it hurt. After 10 years of using a Cozmo insulin pump, and almost a year of no warranty, my son got a new insulin pump.

I was warned years ago that when we changed from Cozmo, we were best to simply forget that we ever owned a Cozmo. I was told to go forward as if this new pump was the very first one you had ever used. That was the only way to avoid the grief and pain that came with change. Boy were they right!

The change itself was beyond painless. I knew the pump that my son was okay with (if he had to retire his Cozmo).  The only issue was the color.  I contacted my Animas rep and in literally a matter of days, she had the pump ordered and was in our kitchen to do all of the training. Karyn is beyond amazing!

As we went through the features of his Ping versus the features we had on our Cozmo, Karyn was just as sad as we were to be switching pumps. She told us that she wanted some of those features on her pump! Kindly, another Animas employee asked that I send her a list of some of the features we were missing in hopes of one day being able to secure them for use in an Animas pump.  Did I mention that this company really has great people working for them?

The Ping doesn't automatically switch basals from weekday to weekend. It doesn't remind my son when to change his sites. It also doesn't allow you to preset personalized temporary basal rates or do all of your pump changes on your computer and beam it back to your pump. It does have a remote that speaks to the pump.  Granted we had a Cozmonitor that did that too but we haven't used it in years and it was attached to the back of the pump.  The Ping remote is a handheld devise that allows me to test my son at night, and do a correction without searching under the covers for his pump.

The Ping also allows him to upload his pump to a website and then Mom can "see" all of his bg tests as well as pump issues and basal rates.  This was a great comfort for reasons I will discuss in another post.

We are now about three weeks into pumping with the Ping.  There have been real glitches. We have both accidentally stopped boluses.  He has somehow suspended a basal rate.  He has failed to put a cartridge in properly and had issues but we will get there. This is still a good pump. It has a warranty if we have problems. We have great support and did I mention that its now under warranty?

Phil, the SUPER COOL Animas Penguin

In honor of Wordless Wednesday, meet Phil the SUPER COOL Animas Penguin. He was way too cute not to bring home from this summer's FFL Canada Conference! 

(And his belly is made to practice inserting infusion sets) 

It will be my wife's job

"You need to do a site change." 

My son replied, "I can't do it by myself. Its in my arm. I can only do leg sites."  

I asked him when this happened. He used to do almost all of site changes except the one arm that he couldn't reach.  "What are you going to do when you leave home?"

"You are going to have to come over to where I am living and do it for me.  Not to worry though, I will stretch my site changes out to every four days to give you a bit of a break."  He paused for a second thinking,"It will be a bit tougher though if I have to move away for work.  You will have to fly out to where ever I am.  I can't afford to pay your travel though because I will need my entire pay cheque. I am sure you can work it out."  

By now I am standing with my mouth hanging open truly amazed by his logic and my older son is rolling on the floor laughing at him.  My older son asked "How long do you expect her to travel?"

"Only until I get married. Once I have a wife it will be her job to do my site changes."  

I pray he gets a wife that will see his logic! 

Oh versus Argh!

I had reminded my son numerous times that it was site change day.  Our movie ended and he headed off to his room. I followed a little while later to give that one last push regarding a site change. 


When I looked into his room, he was sitting on the bed with his site one hand and his other hand was poking his leg. 


"What are you doing??" I asked incredulously. 


"I am looking for a good spot. I need to find the place that when it goes in I go--Oh!Its in?  rather than YIKES! EEK! Man that hurt!"


It made sense I guess but I just look at the spot, find a place with no injection marks, clean it and jab.  Its a simple process.  He was still routing around his leg. 


"Why don't you just stab it and get it over with?" I asked. 


He looked at me like I had lost my final marble.  What planet did I come from, I am sure he wondered.  Finally he replied that it had to be just the right place. He lined up a spot and then took the site away. He closed his eyes.  He opened his eyes. He made a few faces. 


"Just count to six and BAM! Its done. Why are you clicking it a hundred times? You will wear out the inserter before you ever start." 


Once again "the look".  He explained that by clicking and inserting in the air he was loosening it up so that it would be easier when it hit his leg.  It was now my turn to look at him like he has lost a few of his precious brain cells. 


I continued to watch, wonder and press as to when he was actually going to put the site in instead of mauling his leg. After much grumbling I heard the "bang" and....


"AAARRRGGHHH! You shouldn't have pressured me. You had me hit the wrong spot!"  My son continued to moan and groan in pain as I checked to make sure the tape was in place. 


I felt rather bad (but I couldn't tell him that). I left the room and shook my head.  Each day he (or I) stab his fingers and make them bleed numerous times.  He says it doesn't hurt anymore but does it hurt any less? Every 3-7 days (his count not mine) he will stick a larger needle somewhere into his body so that he can live another day.  


I just read a blog post by Scott Johnson in which he notes that diabetes is a constant attack into every aspect of his waking and sleeping life and the only respite will be when he dies--or there is a cure.  It breaks my heart to read this. It breaks my heart to see others go through this and even more so to see my son living that same life. Diabetes is a cruel disease.  

More than we use toothpaste

After complaining yesterday about having to begin to search for a new insulin pump and the lack of new technology, I figured that I really had to add my two cents to the DSMA July question of  "What improvements of adjustments would you make to current diabetes technology?"
Years ago, I had the privledge of attending a diabetes conference in Edmonton.  At that time I was shown some amazing new technologies.  I looked at a pump that was simply a chip.  It was about the size of a small Post-it note.  Inside the Nano pump was the insulin a person required and the mechanics of a normal pump.  The device would have a remote from which you would bolus and program. It looked amazing and I waited for it to appear on the market...and I waited. I have seen similar prototypes. I have seen the Omni pod but none of them were close in size or design to this new pump.

Looking for a new pump today, I see nothing that excites me the way new Cozmo technology has done it for me over the years.  When I first started pump shopping over eight years ago, Cozmo led the way in bells and whistles. It had alerts that were second to none, but I quickly learned that a person wearing a pump with alarms simply turns off the alarm without paying any attention to what it was for!  Well maybe not everyone but my son definitely did.  I suggested that pump companies allow the pump to zap rather than beep or vibrate.  I felt that the shock may stimulate my son to properly respond rather than ignore. I am still waiting for this feature.

Manufacturers seem to now feel that the pumps they have will do, despite not reaching Cozmo standards I have been told. Their focus now is integrating CGM technology.  Here is my first big complaint.  Our first pump was funded by family and supplies were paid out of our pocket.  After a lot of lobbying, pumps and their supplies are now covered for my son in this province.  CGM technology is financially out of my reach. Manufacturers, if you want to make some changes then please make technology available for everyone no matter what the size of their wallet or their insurance plan.

New glucometers, however remain in the budget of the masses for the most part now. They are often offered free with 100 test strips. Honestly, for the companies who are not doing this...I spend over $400 per month on test strips. I think that more than covers the cost of your meters over the course of a year. Please continue, or start, to offer all meters at a reduced (or free) cost to those of us using your product more than we use toothpaste.

Meters have come a long way in the past 11 years, but also seem to have stalled in technology.  They also seem more focused on integrating with pumps...which is not a bad thing BUT when we used the Cozmonitor, I could not keep up with the batteries. They forgot that we test 10+ times per day and batteries have to withstand that.  The idea of an integrated system is wonderful for logging and keeping track but its cost and lack of flexibility led us back on the trail of the perfect meter. Don't get me wrong, we have gone from a finger covered in blood to a pin drop of blood. We have gone from 30 aggonizing seconds to 5 dreaded seconds. These are all things that are hugely appreciated.  

We still have multiple step Glucagon kits but perhaps because we never hope to use it, we just don't care as much as we do about our meters and pumps. Insulins have evolved from the unpredictable NPH and the slow regular insulins to rapid insulins and more stable long lasting insulin. This is a huge benefit for everyone.

Technology has come along way since we started on this road, but seems to have veered off on its own track lately.  The move seems to be away from the general masses who have to pay their own bill. My main message...please work to perfect what we can afford and help to bring into our grasp technology that will keep our loved ones safe and healthy for years to come.

Well, that was my July entry in the DSMA Blog Carnival.  If you would like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/  

Up, Up, Up and now down we go

It seems like forever since we saw any readings that were not double digits (over 180 for my American friends).  Of course during the neverending highs, we had my son's A1c done. We have not gotten back the results.  I really don't want to even begin to look at them. I know we had good readings somewhere in that three month period but when? For how long? I can't remember them so that cannot be a good thing.  Maybe I will just look at the date for our next appointment and not scan to the bottom to view our failing diabetes grade.

Since we saw our diabetes team last week, Mom went crazy and upped all ratios and basal rates.  Nothing was safe. As I state before--I was going to win! I would beat puberty. I would beat hormones.  I would see readings under ten again!

Not long after my acts of diabetes agression, I began to finally see results.  My son texted me from the bus "Mom, I have 7.6 (135)".  Happy dance! I wanted to scream! It was only one reading but finally something in range!!!

I held my breath for the next reading.  Could we go for two? Had I made some headway? YES!! Another good reading. I was doing a happy dance to end all happy dances.  He was proud.  I was proud and those around us probably thought we were insane.

I quickly got used to readings in range again. We still had blips and sites that fell out between my last test and him getting up but things were pretty good.  So good in fact that when we were out for dinner the other night and he said "Mom, I'm low."  I looked at him like he had three heads. 

 "Low?"

"Yep.  I am 3.6 (65) and I need some glucose."

Again I looked at him like he was from Mars.  "Glucose? Oh you need some tablets! I know I have some somewhere. They have to be in here."  It had been so long since we needed them that they were lodged at the bottom of my bag.  The weekend saw more lows--not serious, scary, middle of the night lows,  just "Barb you over shot the mark a smidgen" lows.  This morning we went to the orthodontist.  When we came out I had my son test.  He was low.  He was out of glucose.  Did I have any tablets? What were we going to do? We had been dealing with highs for so long I hadn't concerned myself with carrying extra glucose anymore or topping up my bottles. It appears that neither had my son!

Tonight its tweaking of basals, praying that he doesn't go high again and happily filling up all glucose containers with glucose tablets.  Ah the joys of life with diabetes!

Where has all of the new technology gone?

Is it just me? Have I been in the game too long? Am I no longer in the loop like I once was?

This year brings our 11th anniversary of living with diabetes. Not nearly as much fun as a wedding anniversary but its better than the anniversary of my son's death.  When we first started down this road I was steadily finding something new.

We started on a "new" rapid acting insulin--Humalog.  Soon after, there was Novolog (or NovoRapid for those of us north of the US border).  After that we saw long lasting, peakless insulins like Lantus and Levemir.  We were the first patients that my son's doctor ever prescribed Lantus for and he was pumping at the time (Mom wanted to have some "just in case").

We started on an AccuChek meter that required at least 30 seconds to read and people were grateful for this "speed".  Soon meters were showing up that required 15 and finally 5 seconds to read.  The blood required was no longer a vial per test but a pinhead sized drop.  It seemed that every week there was a new and better meter to try. 

Insulin pumps were also changing on a daily basis.  Smart pumps were coming on the market and everyone was getting into the game.  There were four companies at least to chose from and everyone wanted your business so they each had features that made you take notice.

Continuous Glucose Monitoring was still something done with hospital equipment and a blinded machine but the GlucoWatch and rumours of more were coming.

Fast forward to 2011--We are still using the same meter we have had for the past three years.  We have the same pump that we started my son out on 8 years ago (it has upgraded slightly) and fear when we have to look at a "new" pump because it will not be as good as the current "Green Machine". There are three CGM systems available in the US but none of them are within reach of those of us without insurance.

We are fortunate that our province has an insulin pump program and as long as we live here (or until my son turns 25) he will have his pump and supplies covered.  They also will cover his rapid insulin because it is a must for his pump.  CGM systems remain a dream that must somehow become a reality before he heads off to university but that is a few years yet thankfully.

So am I out of the loop? I know that there are OmniPods and talk of micro-pumps have been in the works for well over five years but these things are not new and no longer excite me.

Am I just getting bored or not spending as much time researching as I once did? I looked forward to the advances in technology.  New meters were collected and used with serious scrutiny. There were better insulins and everything seemed to be moving forward at a breakneck pace. 

Today things seem slower.  There is still "cure" talk but I have grown calloused to such chatter. There is work on closing the loop but again, its not now and its not something I can put my hands on.  

I miss new gadgets and things that made me think that I was doing better by my child. 

Creepy or just observant?

Okay, don't let it get out but I am missing my son.  He has only been gone for a week and will be back with me again in six days (not like I'm counting) but he has spent most of his summer away from me so far.  This is a first. We have never been apart this much.

Now I am sure that he is doing his own happy dance and loving the freedom.  As my fiance suggested, he is most likely not missing "did you bolus? Did you test? How many carbs are in that? Did you change your site?" I don't miss nagging him or getting up to test in the middle of the night.  Last night I was up enough times on my own that I figured I could have done some great basal testing but I digress.

Over the past few days I have been making up fruit salad almost every morning. Everyone in the house likes fruit but few actually go in the fridge and grab it as a snack...except my missing child.  Just before he went to stay with his father, I had to limit his fruit intake. I was seriously getting worried about some of the fruit running straight through his system. He was easily eating 6 plums a day and then moving on to bananas and other items he found in the fridge. Don't get me wrong, I much prefer this to chasing him out of the cookie jar.  This is why I noticed his absence so much more this weekend. I had all of this fruit...and I still had all of this fruit!

I reminded myself that he would be back next week and we would all be heading off for a great family vacation before school starts. He would get to eat lots of fresh fruit (right off of the vine!) and catch up with great friends and family.

Remembering that I still had another child left at home, we decided to do something special for him on Sunday.  He had just bought himself a "new to him", quad and was dying to try it out.  Because we are now living in an urban setting, he can't just hop on and head out through the backyard.  My fiance loaded up the new beast and headed off to a park where my son could open the vehicle up, Mom could try to avoid a stroke, and enjoy a walk and relax while the older child could try, with glee, to kill himself.

The afternoon went well. Son was happy.  Mom survived and got some much needed exercise. Since it was a sunny Sunday, we went for a small drive on our way home.  Where did that drive take us but of course to a lovely ice-cream parlour.  We had definitely earned such a tasty treat!

As we stood at the counter making our choice, I happened to notice something blue around the waist of one of the workers.  When she leaned down into the cooler near me, I saw tubing! She was wearing a pump! Was it an ice blue Cozmo or did she have a Medtronic pump on? I looked a little closer.  Medtronic! I quietly whispered to my family that this girl was wearing a Medtronic pump!

The first look was "sure".  The next remark came from my oldest son.  He simply stated that I was creepy! I didn't say anything to this girl.  I didn't ask about the bulge at the front of her shirt and ask if she was using the CGMS. I just noticed that she had a pump.  In my own head I wondered if she knew the carb count to every flavour in the store but I never asked her.

When I mentioned my son's reaction to a few friends, they kindly reassured me that I was not "creepy". I was normal...well in the world of diabetes.  One friend told me that her young daughter flashed a large biker with her pump when she noticed his.  Mom was happy that it resulted in a pleasant conversation.  Another friend mentioned that she feels like she has met another member of a cool club when shirts rise and pumps are revealed.

I know my youngest son would not have thought it was creepy.  He would have dissed her choice of pumps but he would not have thought it creepy.  We search for pumps all of the time! Its just part of living with diabetes I think.

Why do they do this?

This topic often comes up when speaking with parents of children with diabetes. The child becomes non-compliant (don't you just love that word?) and the endo threatens to take the child's insulin pump away from them.   I really do not understand the reasoning. 


If you child is not bolusing, testing, etc--basically not doing their daily diabetes care by pressing buttons, what makes the professionals think that drawing up a syringe will make them that much more accountable? I think I would feel better if my child had a pump because then I would know that the basal rate is at least being delivered.  If they are on shots they may miss injecting the basal dose the same as they are missing the bolus amount.


Maybe they think that if they are injecting that Mom or Dad will be watching the injection and make the child more accountable? What is the difference between  Mom or Dad watching/doing an injection versus them bolusing or supervising a bolus on a pump? I am honestly stumped by this. 


In defense of the endos however, I have heard of parents who felt that, in some cases, this can be the way to go.  It has been suggested that the psychological implication of being attached to something like an insulin pump 24/7 can become difficult for preteens or teens.  The constant reminder of their illness becomes too much for them. We know that they just want to be "normal" kids and not stand out in any way.  They are often too young to realize that normal is just a setting on the dryer.  They have yet to realize the importance of being an individual. 


Another reason for "taking away" the pump has been to restrict freedom.  In all honesty, I do not exactly understand this reasoning.  The idea is that without the pump the child will have to go back to routine meals and eating habits.  I find two problems with this.  First is that kids will be kids and if they are sneaking food or not bolusing, the lack of a pump and having to inject for food will not change this.  If they didn't bolus they will most likely not inject.  If they were sneaking and not telling what they ate, why would the lack of a pump make that behaviour change?  The second problem I have with this is that most people using injections will now be put on a long lasting insulin like Lantus or Levemir.  They do not require the strict eating schedules of NPH and regular insulin.  They allow a child to pick and choose eating times. Yes, they could be put on an NPH regimen but why would you do that when research shows the basal/bolus regimen to be better for your child? 


The biggest thing I have taken out of this debate is the fact that an endo should NOT be the one to say your child is not complying and should be taken off the pump.  It should be a decision made by the family in consultation with their diabetes team.  The child may in fact need a "pump holiday".  They may be overwhelmed and need a different method of delivery to help them cope. It should not however be a punishment with the pump being the reward.  Good health is the reward and it should be obtained in the best way for the person living with diabetes...and of course the sanity of the parents.  

Adult Pump Program

I said it was time to get back to the grind. Time to get down to brass tacks. Time to tackle the big issues and sure enough the government agreed. On Monday I heard the news that pre-budget consultations were beginning at the end of the week. No pressure there! I knew that if I wanted to see an adult pump program in 2010 there was only one thing to do...get to work!

Last year I had worked with a number of people. We had gathered information. We had devised strategies. We were set. We hit the radios. We were in the newspapers. We met with politicians and wrote letters. Unfortunately we also were met with a recession and our chances of expanding the existing insulin pump program were crushed under the burden of a depressed economy.

2010 is a new year. Things are looking up. The economy of Newfoundland and Labrador is better than many. This year we stand a chance if someone takes the lead. I had a group already in mind. I had parents whose children were now young adults. They would be perfect to speak but many of these parents were busy so the best plan of attack was to have literature prepared for them in advance. That is what I did yesterday--I planned, I wrote, and I emailed. I created a letter to be sent to the submissions committee. It could be passed to friends and they could email it as well. It would take minutes but the impact could be incredible. How many submissions could we send in if I sent it and then asked 5 friends to do the same. Those five friends each sent the email and asked five of their friends to do the same. The impact would be huge. Just look what happened on Facebook last week when we were asked to post our bra color for the day. It can be done. I have sent my email...actually I have a few more people to email yet. I know that some of them are forwarding the instructions on to their friends already. This can make a difference.

The cost of expanding the insulin pump program to adults in this province is minimal. There is little infrastructure required as most is already in place for youth. There is little training involved as there will most likely not be a lot of new pumpers. The benefit will be to those already pumping and to the young adults who turn 18 and find themselves with no means to continue their pump therapy. We need to protect them. We need to help those retirees who will no longer have their pumps and supplies covered by their insurance with their reduced "retirement plans". We need to protect our loved ones with diabetes. If we can improve their quality of care then we will reduce the burden that the health care system will see if they develop complications.

We can do this. You can do this. If you live in the province of Newfoundland and Labrador or know someone who does, send the following email to them. Have them send it to budgetsubmissions@gov.nl.ca Ask them to send it to their friends. Let's see real public pressure this time around. Let us help the government see sense!

Pre-budget submission 2010: Adult Insulin Pump Program

In 2007, the government of Newfoundland and Labrador became the third province to provide coverage for insulin pumps and supplies to their youngest residents. In 2010, we are asking this government to continue with this mandate towards superior provincial health care and extend this benefit to all citizens of the province living with insulin dependent diabetes.

It is estimated that diabetes will affect over 3 million Canadians in 2010. Newfoundland and Labrador will be the hardest hit as it has the highest incidence of diabetes in the country. The medical costs of those living with diabetes are two to three times higher than those who are not living with diabetes. Direct costs from this disease can range from $1000-$15,000 annually and the cost to the Canadian health care system is expected to reach $15.6 billion this year and $19.2 billion by 2020. By taking a proactive approach to diabetes care through insulin pump therapy, the government of Newfoundland and Labrador can begin to seriously reduce the enormous costs of this disease on the health care system.

When diabetes is managed with advanced treatment options such as basal/bolus insulin regimens, insulin pumps, regular blood glucose testing and Continuous Glucose Monitoring Systems, there is a very real decrease in the amount of time spent in the hospital and a very real decrease in the cost to the health care system. There is a 76% decrease in retinopathy (eye disease), 34-56% decrease in kidney disease, and 69% decrease in neuropathy (nerve disease) in intensively treated patients with diabetes versus those who use more outdated methods. Reductions in these diseases as well as a reduction in hospitalization for poor diabetes control adds up to a large fiscal savings.

Currently residents of Newfoundland and Labrador under 18 years of age are privy to much of this advanced treatment. The current insulin pump program allows the children of Newfoundland and Labrador who are living with diabetes to avail of the best medical care available to them. Sadly, when they turn 18 years of age they must sacrifice their care unless their personal finances allow them to take over their own health care costs. The reality is that many young people cannot afford to do this. They are put in a position where they must choose to leave the province to find either higher paying jobs or ones with more comprehensive benefit packages or stay at home and sacrifice their health with less effective insulin regimens.

The government of Newfoundland and Labrador has the power to change this in their 2010 budget. Expanding the insulin pump program to adults in this province will not have many of the costs associated with the initial program. Many adults who would avail of such a program are already insulin pump users and thereby removing the need for much of the training services otherwise required. In the most highly saturated markets, it is thought that only 35% of those eligible choose to use an insulin pump. In Newfoundland and Labrador, this translates to approximately 500 adults, 30% of whom would most likely have existing coverage. An expansion of the insulin pump program would therefore cost the government a maximum of $1.3 million per year in insulin pumps and supplies.

Insulin pump therapy has a huge impact on the lives of people living with diabetes. This group is at a high risk for depression but insulin pump therapy has been shown to improve quality of life and provide for a better self image.

We therefore respectfully ask that the government of Newfoundland and Labrador expand its insulin pump program to include all citizens of the province who have insulin dependent diabetes.

Sincerely;

Diabetes Advocacy

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.