Insulin Can Be Deadly. An Insulin Pump is a Tool.

Recently the CBC and partnering news agencies released an article on the dangers of certain medical devices.  In the article, it was suggested that insulin pumps are lethal and should be more closely scrutinized by Health Canada. I would have to correct the CBC in that it is not just insulin pumps that are deadly, but insulin itself.

insulin can be deadly

Too little or too much insulin can lead to death and the amount that constitutes too much or too little varies from person to person, from hour to hour.  There is a term used in the diabetes community, “your diabetes may vary”.  It is because there is no one size fits all dosing when it comes to insulin. A doctor cannot prescribe 6 units of long-acting insulin and 2 units of rapid per meal for all 6 year old children. She cannot tell all young males of 25 that they should set a basal rate of 1.2units per hour in his pump and bolus 10 units for his meals.

Diabetes varies

Diabetes varies between two seemingly similar people.  One six-year-old could be taller than the other.  One could be in hockey all day while the other was in a piano recital. The twenty fives year old males could both be on the same soccer team but one is a vegan and the other will be enjoying a post-game meal at Boston Pizza.  While both individuals need insulin to live the amount of insulin that they need will vary in every one of those situations.

It is just as impossible to prescribe one insulin treatment for one person.  As one person with diabetes discovered, there are over 42 things that can influence blood glucose readings. There is the fat content of a meal.  How many grams of carbohydrates are in the meal? What activity level occurred before the meal? How active will the person be after the meal? What was their blood glucose level before they ate? Are they coming down with a virus? Are they menstruating? Do they feel stressed at work? The list goes on making the “take 2 units a day and call me in the morning” adage impossible to follow.

insulin pumpsInsulin pumps are an insulin delivery method.

Instead of injecting a long-acting insulin, the pump administers small amounts of insulin on a regular basis throughout the day.  The amount of insulin it delivers is decided on based on a number of factors.  These factors are examined by both the person’s diabetes team and the person with diabetes themselves. They examine blood glucose and/or a continuous glucose monitor readings.  This is the same way that a person on injections will decide if they need to inject more long-acting insulin.

An insulin pump also allows delivery of insulin for meals and the correction of high blood glucose levels. Instead of injecting a syringe of insulin into their body, a person with diabetes is able to do the calculation with the help of their pump.  They then tell the pump how much insulin he/she needs based on previous glucose readings, trending arrows on a continuous monitor, amount of carbohydrates in a meal, planned activity levels, and much more.

Insulin Pumps do not think

As Dr. Peter Senior stated, the insulin pump does not think for you.  It will help you to make decisions but it is just a machine. Machines malfunction.  As pumpers, we understand this but as Dr. Senior also states “Type 1 diabetes carries life-long risks regardless of how people with the condition choose to receive their insulin.”

We understand that machines can fail.  We can only imagine the heart-break of the families who were interviewed for these articles.  The diabetes community is very familiar with how deadly diabetes is no matter what method of delivery you use.

blue candleDiabetes Kills

If you spend any time in the Diabetes online community, you will quickly know whenever a member passes.  A sea of blue candles will appear on your feed. Our hearts break.  We know all to that it could be us. It may very well have been a friend.

We understand that diabetes is not about the jokes or the memes about Starbuck’s drinks. It is a careful balance of diet and insulin and never knowing when something will tip the scales.

To manage that balance, we need tools. Tools like insulin pumps that carefully mimic the insulin delivery of the pancreas.  We need tools like continuous glucose monitors that now tell us and our insulin pumps what blood glucose levels are in real time and are able to track if they are rising or falling. This ability to predict glucose readings can help to avoid further impairment.

Impairment like the 1445 incidence of hyperglycemia mentioned in the articles.  Hyperglycemia is a very real threat when you use an insulin pump.  There is no background insulin.  If you infusion set kinks inside your body (this is the piece that delivers insulin under the skin), you will not be getting the proper amount of insulin and blood glucose values will begin to climb.

t:slimX2 insulin pumpInsulin Pumps and Sensors are helpful tools

A sensor in the body tracking glucose levels on a continuous basis tells the wearer that more insulin is required. They are able to stop, examine their infusion set, the insulin pump, their activity level and diet to decide the best course of action.  It might be changing their infusion set. It could mean injecting insulin through a syringe.  There could be a problem with the insulin pump. This complete system allows a person with diabetes to more quickly access the issue before they begin to suffer the cognitive impairment that can accompany high blood glucose levels.

Checks and balances

Checks and balances for medical technology are very important.  Devices such as insulin pumps must be thoroughly tested and reviewed before being approved for use.  Companies must be held accountable for their customer service and providing proper education to their clients.

The recent media stories, however, creates fear in the wrong place.  The CBC and it’s partners need to understand that diabetes is unlike most other diseases.  Most people with diabetes walk around and look like everyone else.  They fix your plumbing, teach your children, climb mountains and run countries.  You might see their pump or their glucose monitor sensor.  What you don’t see however is the hundreds of life and death decisions that they make each and every day.  You don’t see the challenges that they face.  They often don’t see them either because it becomes part of who they are.

wearing an insulin pump

Please understand that diabetes is terrifying.  Insulin pumps are simply helpful tools that allow our loved ones to live full and healthy lives.  We need more access and understanding not more fear of something that is already well regulated.

Why we need choice

choice is importantWhen I first decided to put my son on an insulin pump I was overwhelmed by the choices.  I wasn’t sure exactly what we needed in an insulin pump but I could get one from Roche or a different one from Animas.  There was one from Medtronic and there was a new pump in town, called Cozmo. Four choices to consider.

How was I going to decide?

With the help of friends! I was part of an incredible online email list that told me which pump they preferred.  I also talked sales reps who quickly became friends! They were all wonderful.  They guided me and told me which questions to ask…both of pump companies and of myself.

How much insulin did we need?

Well back then my son was only 5 and I was throwing out insulin on a regular basis so reservoir size wasn’t much of a concern. I would only fill as much as we would need between site changes.

Did we need reminders?

Heck yes! I had two young children and was very active in their lives.  There was no such thing as a continuous glucose monitor so I was up at all hours testing, correcting, and treating.  I had trouble remembering my name. I desperately needed a reminder of things like site changes and missed boluses.

Did we need more than one basal pattern?

Granted my son wasn’t working shifts at that point in his life but he was beginning his school career.  That meant gym days and sleep in days and hours upon hours of outside play days.  A pump that could switch gears and change patterns based on the day of the week was a definite benefit.

My son was 5 when I began researching his first insulin pump.  He needed a pump that would administer tiny amounts of insulin…much smaller than he would ever use now. That was 15 years ago however, now his needs have changed a lot.

Fifteen years later…

He still needs reminders. He hates carrying anything extra so the more compact the pump the better  He works shifts and is up at odd hours.  A pump that makes basal switches like his very first pump did would be ideal.  He uses a lot more insulin at 20 than he did when he was 5.  A 300 unit reservoir is a must.

This is 2018 however and not 2003.  He can no longer choose a Roche pump or even the AccuChek brand.  He can’t get a new Cozmo because they left the market one insulin pump life ago.  He likes his Animas pump but that is now out of warranty. He is left with two choices…sort of.

He could try an OmniPod but he really doesn’t like them. Yes, he has seen them.  He knows that they are much smaller but they aren’t for him.

That leaves him with a Medtronic pump.  He doesn’t want that either.  It also doesn’t work with the Dexcom that he plans to use for work.

Neither pump fits his lifestyle.  Neither of these insulin pumps have all of the features that he wants and needs.

What does this mean for my son?

It means that he waits.  He still has a working Animas pump and cartridges.  He has two old Cozmo insulin pumps and a few boxes of old cartridges for them.  He won’t rush to get a new insulin pump.  He will make do for the moment and wait for there to be more choices on the market,

Everyone who lives with diabetes deserves choice.

No two people with diabetes are the same.  Even the same person with diabetes will have different needs in an insulin pump over time,  This is why they need choice,  Diabetes is not a one size fits all disease. Every person needs to tailor their care to fit their life at that point in time.

As a wise person with diabetes once said…”Having diabetes is not my choice.  How to manage it should be.”

 

 

Disability Tax Credit…What now?

Disability Tax Credit next steps for people with diabetesLast week, CRA decided to reverse its policy on adults living with Type 1 diabetes and the Disability Tax Credit. If you are in India here is the pan card application online, this is a unique card for taxpayers. This probably has many people wondering..what now?? Here are a few next steps for adults living with type 1.

If you have had your application rejected since May of 2017, CRA has said that they will be re-examining all denied claims for people living with type 1 diabetes.

This means that if you would have previously qualified for the DTC based on pre-May guidelines, your application status will be changed to approved.

If you haven’t made your application yet, you can now do so with some confidence of approval.

If you live with type 1 diabetes and are intensively managing your diabetes, then you could qualify.  As per before May 2017, you will have to show the time you spent.  That time will have to be more than 14 hours per week.  It cannot include time spent on exercise, carb counting or recovering from a low.

Follow the Disability Advisory’s Committee’s actions and calls for action.

The Disability Advisory Committee is made up of professionals and advocates.  They will be working to see the DTC fairly applied to all qualifying individuals.

If you are interested in seeing the credit properly reflect the needs of Canadians and more specifically, Canadians with type 1 diabetes, I would suggest that you follow the activities of this committee. They will be looking for submissions and information from Canadians.  Send in your letters and continue to help them inform Ottawa of why people with diabetes who intensively manage their diabetes qualify for this credit.

Keep the pressure on your MPs.

Make sure that your MP understands that the Liberal government’s recent actions surrounding the Disability Tax Credit are not acceptable.  Let them know that we do not appreciate being lied to.  Ensure that they understand what is involved in diabetes care on a daily basis.  Work to educate them on how people with type 1 diabetes spend over 14 hours on life sustaining therapy.

If you have any more questions or would like someone to review your application before submitting it to CRA for approval, I am always just an email away!

How to Fight for the Disability Tax Credit with Type 1 Diabetes

How to fight for the DTC with T1DDiabetes Canada recently released a statement claiming that the Canadian Revenue Agency (CRA) is now declining 80% of applications for the Disability Tax Credit (DTC) submitted by people living with type 1 diabetes.  I cannot confirm or deny these figures. I can state that I am seeing a significant increase in the number of people contacting. They are reaching out because they  or  their clients have been declined for the DTC.

What is going on with the DTC?

No one seems to know.  CRA claims that there has been no change in policy.  Public concern seems to suggest otherwise.

For years, people with diabetes have often received a follow-up letter when they have made their application asking for more details from their doctor.  In the past, that letter was filled out in a similar manner to the initial application and the claim was approved.  This seems to be happening with less frequency now.

People living with diabetes are often receiving a letter stating that “an adult who independently manages insulin therapy on a regular basis generally does not meet the 14 hours per week requirement unless there are exceptional circumstances.”.  In some cases this is followed by a request for more information but in other cases it is part of the denial for their claim.

Does this mean that I should not apply?

No.  People living with diabetes usually spend over 14 hours per week to intensively manage their diabetes.  Granted this does not include all people living with diabetes but does include a large majority.

You should continue to send in your detailed applications. Make sure that you are adding tasks that are approved and that your total is over 14 hours.

What happens after I apply for the DTC?

Once you and your doctor have completed your forms and returned your application, there will be some time before you hear back from CRA.

Odds are high that your doctor will be contacted and asked for more information.  Again, make sure that the follow up letter is detailed. Take care to  clearly show that you spend over 14 hours per week on your diabetes care.

What if I am rejected?

If you are turned down for the Disability Tax Credit, you have a few options.

First you can ask that your file be reassessed by another officer.  Sometimes fresh eyes will give a fresh perspective and the ruling can be changed.

Second, you can formally appeal their decision within the first 90 days of your rejection letter.  This is a detailed process but does not necessarily require a lawyer.  If you choose to go this route (and I would encourage everyone to do so), be sure to keep careful and detailed records. You must also contact CRA for a copy of your file under the Access to Information Act to better understand what you are fighting against.

Write your Member of Parliament

Finally, at any stage of the process, I would encourage you to ask for the assistance of your MP.  Whether you are thinking of applying, have applied or have been rejected, it is important for Members of Parliament to be aware of this situation.  Diabetes Canada has written a great template for people to send to their MP.  Download the letter. Be sure to personalize it to your situation and forward it on.  Remember that letters sent to a Member of Parliament in Ottawa do not require postage.

The more MPs that contact the Finance Department and ask them what is going on, the stronger the case for change and fairness.

Together we were able to get access to this credit for some people living with diabetes over 10 years ago.  Working together again, we will create change for even more individuals!

Which Liberal Government?

The summer is over and it’s now time to get back to work.

This summer I saw a number of variations of this status posted all over Facebook…

“I would like to highlight the Liberal government removing the subsidy for blood test strips. Diabetics need very frequent blood testing, up to 5+ times a day. The cost of strips is $70.00 – outcome – reduced blood glucose testing and more hospital admissions from hyper or hypo glycemic episodes.
Diabetes . . . I am asking if everyone could put this as their status for 1 hour. I’m pretty sure I know the ones that will. Think of someone you know or love who has or has had diabetes. My hope is that in 2016 a cure will be found. Will you post it for 1 hour? To honor those who have fought or are fighting diabetes.? “

Many people were sharing this status.  Many more were asking…where is this from? Whose government is doing this? The answers were surprising.

liberalsI was certain that it was Newfoundland.  This spring the new Liberal government  announced changes to the provincial prescription drug plan.  They were limiting the number of test strips to 2500 annually for those using MDI, 700 for those using just a long acting insulin, 100 for those not using insulin and 50 for those who have only recently been diagnosed with Type 2 diabetes.*

As this post continued to make its rounds however, I was shocked to see that a number of other locations were also claiming that this was a reality in their home area. People from as far away as Australia were saying that this had happened to them.  They said it was their government that the post was directed at.  All I could think was, “this is crazy!”

For years, study after study has shown how important tight control and home blood glucose monitoring is.  They have shown that good control equates to improved health outcomes AND immediate financial benefit in terms of reduced loss of work. Why would governments think that they were saving money by cutting access to blood glucose testing strips?

This entire scenario hits too close to home as my son turns 19. He may soon be in a position of losing his health care coverage.  His days of being covered by his father’s private health care plan are numbered.   My stomach aches each time I think of this safety net being taken away.  He does have some coverage from the province.  We will find a way but what about other children?

I don’t mean small children, I mean adults who are struggling to find their way.  What about them? What about their families? How do they cope? How do you work a minimum wage job, pay your rent, buy your groceries AND cover your diabetes care costs?

Again, we know how important blood glucose testing is. As parents, we have spent years asking  our children “Did you test?” and “What was your blood glucose reading?”  How do they answer those questions when they can’t afford the test strips? How accurate will their guess have to be?

Without proper testing, they cannot accurately dose their insulin. They cannot make exact judgement calls on corrections.  They will run a high risk of complications.  They most likely will have more sick days.  This will cost governments more money in lost tax revenue and create an increased drain on hospital services.

If a person with diabetes is unable to test and stop potentially dangerous high blood glucose levels on their own, they will be forced to seek hospital treatments.  A 2008 report in the Toronto Star suggests that one typical hospital stay then cost approximately $7000**.  $7000…you can get 100 strips for $80-$100.  If you test 8-10 times per day that one hospital stay would still  cost more than 2 years worth of test strips. Two years. 

It would appear that the people in charge of making these policy changes need to better understand what they have done.  Basic math shows the folly in such policies. We can only hope that public pressure and common sense will ultimately prevail.  Our loved ones with diabetes need access to the proper medical supplies to ensure that they can continue to be healthy, productive members of our societies.

*http://www.thetelegram.com/News/Local/2016-04-17/article-4500650/Changes-coming-to-provincial-drug-program/1

**https://www.thestar.com/news/canada/2008/03/18/average_hospital_stay_costs_nearly_7000_study.html

 

Governments are a mess. Private insurance is too expensive.

Governments all over are in a mess.  Private insurance is out of reach for too many.  What is left?

Last week our province handed down its latest budget.  Earlier in the month, the federal government released its budget.  No matter where you look, governments are cutting back and taking programs away.  They are not interested in expanding coverage, sharing coverage or adding new coverage to their medical expenses.

We can tell them all about the cost savings that these programs will offer but all that they see is the outlay and staffing.  They don’t see the benefits.  It can be very frustrating.

As I was logging in to write this post, I happened to open an article on the funding of the Edmonton Protocol.  For over 16 years, this therapy has been available as a last resort for people with diabetes and guess what? Governments are thinking twice about funding it as well!

What are we to do? If governments are not going to be funding treatments that have been around for 16 years, what is going to happen when the artificial pancreas comes to market? Most provinces are not funding sensor augmented pumps at this point. The majority of provinces do not provide adults with any sort of financial assistance for pumps.   What can we do?

This is where my mind as been stewing. I don’t have a lot of answers but there must be one.  We need change.  Our adults living with diabetes need reasonable access to the latest diabetes technologies to keep them healthy and productive members of society. There has to be a way to help those who just cannot afford to carry the complete financial burden.

It would have to be a  private venture.   The public system is a mess no matter where you live.  It would have to be accessible to all– a system that is reflective of what you can afford.

Private insurance companies exist but they are often too  expensive.  Many private insurance policies (either purchased by individuals or by companies) do not cover enough diabetes supplies to last a person more than a few  months.  If they do cover more, they are often so expensive that only a few can afford them.

There has to be a way for private industry, pharmaceutical entities, and those in need to somehow all have their needs met.  There has to be a way to create something new that would be sustainable and yet help those who cannot afford to help themselves.  There has to be a way to bring together all of the players to create something that doesn’t see favoritism or a monopoly but rather a way to help everyone in need through the help of everyone involved.

And this is where my brain stalls and spins.  How would you fix the problem? How would you provide better access for diabetes supplies to everyone who needs them? Where would you turn? I really am curious…

help

Lace up For Diabetes

#LaceUp4Diabetes  Have you heard of it?  I admit that I hadn’t.  What I had heard of was a friend on Facebook who was giving away these adorable shoe laces.

I commented on how cute they were.  He offered to send me a pair. Unfortunately because we were living in two separate countries, the hassle of mailing them was a bit much.  He did however pass along to his contact that I was interested in the laces.  This was the result…

#LaceUp4Diabetes
#LaceUp4Diabetes

Thirty pairs of shoes laces with the World Diabetes Circle on them!

It was a wonderful surprise.  I had only expected one pair.

These cute novelty items are the work of Novo Nordisk in an effort to offer support for those living with and at risk for, diabetes.  They write “Because if we all take these steps together, we can change diabetes.”  So very true!  Whether we work together towards a cure, to offer support, or to change legislation, one voice united is so much stronger.

Dear John and Jane Public

Dear John and Jane Public,

I understand that you probably know very little about diabetes.  Before March 17, 2000 I was just as ignorant.  Not knowing is okay. There are many things that I don’t know about but I am always willing to learn.  I wish that more of you were as well.

If you open your mind and learn, I am hoping that you will also begin to have more empathy and feel less inclined to point blame at the victims.  For some reason, a lot of the general public thinks that it is okay to blame people with diabetes for their condition.  it doesn’t matter if they are 2 or 92, many people feel that if someone has diabetes that they must have done something to make it happen.

In making that assumption you are hurting people like me, my child and many others who did nothing more than be born with genes that led their bodies to attack themselves.

You would think that after all of these years that I would have a tough skin–I do.  I am used to well meaning people passing judgments on food that my child can or cannot eat.  I am used to people telling me that they understand my worries because their grandmother developed diabetes last year at age 75.  I am used to people saying that my child must have it really bad because he uses an insulin pump.

I have learned to calmly tell those kind health care providers who ask if he will outgrow it that, no, he can’t.  He can’t grow himself a new lung and he won’t grow a functioning pancreas any time soon but thanks for asking!  I have learned to smile when I watch a TV show that suggests that they can track a missing person through the GPS on their insulin pump.  These are silly things that just get filed under “Things you deal with when you live with diabetes”.

John. Jane.  I do have to ask you one thing though.  You see, my skin has thickened. I know that I did not cause my son’s diabetes. He never had chocolate bars or was force-fed jube jubes as a tot.  He had breast milk and very few processed foods but that was not enough to protect him from developing diabetes.  His body still failed him.  It attacked himself leaving him terribly sick and almost killing him.

My genes may have played a role in this attack.  I have no family history of Type 1 diabetes and very little of Type 2 but I will accept that somewhere in my genetic makeup, there may have been some code that when passed onto his tiny body, created the havoc that led to his diagnosis.

My ignorance of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have. I will accept that.  I believed the ER doctor who examined him and told me that he just had the flu.  That misdiagnosis almost cost my son his life but I will take the blame for listening to the doctor, even for a short while.

As you can see, I don’t need you to add to my guilt with nonsense. There are enough real contributors to keep me feeling horrible but they don’t.  Keeping my son alive and healthy for the past 15 years have been a greater priority.  It has been more important to learn about his disease, get him the best medical treatment, and teach him how to take care of himself than wallow in guilt and blame.

So John and Jane, what I am asking from you is for a bit more understanding.  You don’t have to know what my life has been like. You don’t have to know what my son deals with every minute of every day.  If you would like to learn more, please ask me and I will give you as much information as you want.  What you do can for me however, is to think before you speak.  You can think before you laugh at jokes about people getting diabetes.  You can think before you spread false information.

Please do not use scare tactics and tell your children that if they have one more candy out of the dish that they will get diabetes.  This is no more likely than your eight-year-old dropping dead of a heart attack because they had one more french fry.  You are right to teach your child the importance of healthy eating.  You are right to tell them how important eating balanced meals and staying active are but don’t make them think that the child in their classroom is responsible for her diabetes because she ate too much candy.  It isn’t fair to your child who may not want to be friends with someone who has such poor willpower, and it is not fair to that student who has enough going on in her body to deal with and could really use the support of friends.

Please Mr. and Mrs. Public, do not tell your friends about people getting diabetes because they are fat, lazy or because their parents didn’t care enough to stop them from eating junk. You may be sitting in a room with a parent whose child has diabetes.  That parent has struggled to make sure that their son or daughter has led a “normal” life while dealing with 3am low blood glucose levels that could kill their child.  That parent may have spent the past week worried about how their son would handle the pressures of graduation ceremonies and after parties while managing their diabetes care on their own.

John and Jane Public, I know that you cannot begin to understand what my life has been like for the past 15 years.  I know that you have no idea as to what my son deals with each day.  I don’t know what its like to deal with a child with asthma or Crohn’s disease but I would never blame the child or the parents for the disease.  I would listen and learn.  I would empathize and offer the little support that I could.

I don’t expect you to learn about diabetes.  I am not asking you to.  I will ignore most of your ignorant comments but if you let me, I will try to educate you a bit as well.  I know too much about diabetes.  I have spent the last 15 years immersed in its world.

Don’t feel bad for me. I have met some amazing people and I have learned a lot.  My son doesn’t need your pity either. He is quite happy just leading his life but when you see his pump or watch him lance his finger remember…

  • Yes it hurts but it keeps him alive.
  • Yes, you could do it if you had to and hopefully you will never have to.
  • Yes, you should stay away from that junk food and exercise more.  It may or may not stop you from developing diabetes but either way, you will feel better.
  • Yes, he does have the bad kind of diabetes because there is no good kind.
  • Yes, its okay to be thankful that you don’t have to experience any of this….I really wish my family didn’t have to either but we do so please, think before you speak, and maybe, just maybe, take the time to learn about this disease that is impacting more and more families every day.

Sincerely;

A  tired mother of a young man with Type 1 diabetes.

Loving created by my dear friend Cheryl D

Loving created by my dear friend Cheryl D

 

Summit Diabetes

Earlier this summer, I received an email from a young lady who was embarking on an adventure that looked really interesting. I meant to take a much closer look sooner but the email came in while I was away and then managed to get lost in my inbox.  Today I decided to seek it out again and see what she was up to.


The young lady’s name is Haley Maurice.  She is now 15 and was diagnosed with Type 1 diabetes at the age of 7.  Her plan for this summer was adventurous for any teen but even more exceptional when you remember that she is living with type 1 diabetes.


“On July 16th, my brother Ethan and I will be backpacking 221 miles from Yosemite National Park to the top of the highest peak in the continental United States, Mt. Whitney, to raise funds for JDRF.


We’ll be trekking in this high alpine terrain for an estimated three weeks, conquering over 46,000 ft of elevation gain and venturing deep into the back country of the Sierra Nevada Mountains. It’ll be just us out there, with only two resupply points along the way to pick up more diabetic supplies and food to fuel us for the entire duration of the hike. We’ve been vigorously training and setting up our fundraiser for the past three months and are aspiring to reach our fundraising goal of $1000 per mile ($221,000) for JDRF.”


A few days ago, I hiked a 1.7km trail that has a 500 ft decent.  That was enough of a challenge for me.  I can’t begin to imagine 221 miles and 46,000 feet with blood glucose testing, site changes, insulin adjustments, treating lows, and carrying food and shelter.  I further was not sure how I would feel if it was my child with diabetes doing this.


Silly, of course I know how I would feel. I would be nervous and proud.  I would be terrified of all that could go wrong but would trust in the other sibling to help out in emergencies. I would be proud that my child would take on such an amazing adventure for a good cause.  I am guessing that Haley and Ethan’s parents probably felt much the same way.


In looking at the Summit Diabetes website and exploring some of their social media posts, I see that the two siblings were for the most part successful in their journey. Yesterday they noted…

“We made it!!! 221 miles of hiking from Yosemite to Mount Whitney!


Unfortunately, we didn’t make the top of Whitney as a freak snowstorm nearly froze us to death this morning just a quarter mile from the top.”


What an amazing feat! I am so impressed by these young people. I am impressed by their courage, dedication and stamina.  When Haley contacted me, she was asking for only one thing, for me to share her story and that is what I hope to do here.  Please look at their video, check out their website and the amazing pictures of their adventure.  If you can, also contribute to their goal of raising $1000 for every one mile that they hiked this summer.


Congratulations Haley and Ethan!

summit

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.
NL pump petition