How much would it cost me to manage my diabetes?

The other day, it seemed like I was constantly having to use the washroom.  I thought, what if I was one of those people diagnosed later in life with Type 1? How would I handle things? I don’t even want to go there!!!

I knew if was not a real concern.  I knew that I would do what must be done but I would not dwell on the daily routine.  I did however begin to think about the financial aspect.  What if I did have Type 1? I am over 25.  I have no private medical coverage. I would have to cover everything out of pocket.  How expensive would that really be?

First there would be the insulin pump.  I would definitely want the best technology to help me along.  Since I already know what is out there I would most likely look to purchase a sensor augmented insulin pump.  According to a recent letter from my son’s insulin pump company, the initial cost of such a pump would be $8240.  This would give me an insulin pump, a CGM transmitter and four sensors.  I am guessing that I would still need to buy the receiver for another $700.  A box of cartridges would last me ideally for one month as would the infusion sets.  Those items are $64 and $195 respectively. For a total of $9299 I would have a pump with no batteries or insulin but I would have a pump.

Obviously if I have type 1 diabetes, I would need to purchase insulin for myself.  That works out to approximately $70 per month if I am using an insulin pump and able to squeeze every drop of insulin from each vial.

I would also have to test by blood glucose levels 8-10 times per day. Perhaps I would test a little less because of my CGM but even at 4-8 tests per day I would require $90-$180 in strips per month.  This does not include having to purchase ketone strips which are over $3 per strip for use when high or ill.

Finally there would be the batteries for the pump, the alcohol swabs, SkinTac wipes, spare syringes, lancets and tape that would also be required to keep me healthy.

Our province does have a public medical program that I would qualify. It looks at our family income and then dictates that we must cover an amount equal to 7.5% of our family income first.  My partner runs his own business so our income can fluctuate.  I would anticipate that based on their formula, I would have to spend at least $4500 on my diabetes care before they would begin to cover any of my expenses.

Sadly, based on my calculations, the items that the government would cover under their program (insulin, some test strips and syringes) would most likely not reach the magic number of over $4500.  I would instead be left to cover, out of my own pocket well over $14,000 in annual expenses.

I honestly had no idea what the total of this would be.  People with diabetes tell me all of the time that the cost to keep themselves alive and healthy is the same as a car payment or a downpayment on their first house.  They are not exaggerating.  The costs of maintaining your diabetes care in the best way possible is over $14,500 by my calculations.

The chart below is based on never getting sick. It assumes that no sites will fail or fall out while hot, sweaty, or get hooked on a cupboard door and become removed. It assumes that insulin will never spoil and everything will work out as anticipated.  That never happens in life or when dealing with diabetes.

Without private insurance or a rich great uncle, there is no way the average person can afford to maintain optimal health care if they also have type 1 diabetes.  Yes, you can live and function on injections.  Yes, you can live and work without a Continuous Glucose Monitor (CGM) but if you want to use the best tools available to give you the very best quality of life….well find a job with great insurance because if you have to rely on just your wallet and the help of the provincial government and you are over 25, its not going to happen.

sensor augmented pump costs feb 2015

Choice. YDMV

Choice.

Your Diabetes May Vary.

Everyone is different.

What works for me, may not work for you.

These phrases are very important in the world of diabetes and specifically in the world of Type 1 diabetes.

I have always been vehement about people’s right to choose. I believe that individuals have to do what is right for them.  What is right for you may be not right for me but does that mean that I should stop you from doing it, right?

I have been equally as dedicated to the right to choose since entering the world of diabetes. I believe that people should be able to go on an insulin pump at diagnosis and not wait for a specific period of time…if they so choose.

I believe that everyone should have access to a Continuous Glucose Monitor. Access should not be restricted by income level or insurance plan…if they wish to use one.

Most importantly I believe in the right to education.  Education allows people to make informed choices.  Just because an insulin pump has been the best treatment option for my son, doesn’t make the best option for you.  Every person is different. Every body reacts differently. Each person should have the right and be educated to make the choices that fit their lifestyle regardless of budget.  That is my point.

I know of adults who have pumped and hated it. They did not want to be tethered to something. They felt that they had better control with injections.  That was their choice and they made it armed with information about themselves and the alternatives.  Everyone is different.

I have met parents who have seen great success using NPH on their children. I was able to learn how to use NPH and a rapid acting insulin in such a way that my son rarely did without at birthday parties or other food related events. We were educated.  We could make choices that worked for our families.  What worked for us does not always work for someone else.

If someone chooses to use an insulin pump, they have to choose the pump that works for them.  Some people don’t like tubing. Some people want a pump that is water-proof. Some people require larger reservoirs or a sensor augmented pump. It is vital that they be allowed to learn about their options and then make the choice that fits their lifestyle.

We all have seen how amazing Continuous Glucose Monitors are…but some people still don’t want them. My son is one of those not sold on the benefits of wearing yet another device. They have a right to make that choice but that choice should not be driven by money.  It should be made based on their own desires and knowledge of their diabetes care.

No one should have to choose insulin or bread, pump supplies or car payment, insulin pump or house down payment, a cab ride home after a night out or a sensor for their CGM.

No one should be forced to use an insulin regimen because they are ignorant of the options.

No one should be stuck in one treatment form or the other because it might take a bit more time to educate them.

Options should be given to everyone regardless of age or income.

People with diabetes should be shown all of the insulin options–do you want to go with limited injections? Do you want to use a basal/bolus regimen? Do you want to use an insulin pump? What features are important to you? Do you want to have a pump with tubing or without? A pump with CGM compatibility or without? Do you want to try a CGM? What works best for you and your lifestyle? What will give you the best quality of life?  Yes it can be overwhelming but knowledge is power.

One treatment option does not work for everyone. I have come across people who have created their own insulin cocktails to maintain great control on injections. I have known people who only used their pumps to cover meals and used an injection to deliver their background insulin.  I am hearing of people looking to add in the use of inhaled insulin for very specific needs.

Everyone is different but everyone deserves the right to make their own informed choices.  Those same people who make informed  choices then deserve our respect because what works for them may not necessarily work for everyone else.

Thank you DiabetesInsight.ie
Thank you DiabetesInsight.ie

15 Years later and its still happening

On my Facebook news feed, there has been a lot of mention of a child who was recently diagnosed with Type 1 diabetes.  Too many children are diagnosed each day but this story is getting greater attention because she was not diagnosed until she was in a coma and now appears to have brain damage.

I can’t give you the details of this particular story.  I haven’t followed it.  I see the photos.  My heart breaks for the family and the young girl but I can’t sit down and read about them.  I can’t follow their story.  It cuts me to the core because I know that there but for the grace of God go I.

It was almost 15 years ago when my then two-year-old son was behaving strangely. He was clingy and tired. He was constantly soaking his diapers but he also was constantly drinking when he was awake.  We couldn’t keep him away from fluids. If we restricted what he drank to try to save his diapers, he marched his little body to the fridge and would guzzle apple juice from the carton.

We had taken him to the emergency room.  He had the flu we were told.  We waited for him to get better but he didn’t.  We made an appointment with our family doctor and our world came crashing down in waves.  Our doctor thought he had diabetes. He had ketoacidosis.  He needed x-rays.  He had to go to another hospital.  This was very serious.

I understood x-rays, hospital and serious.  My son was laboring to breathe in my arms and his body was cold.  It was serious but it couldn’t be that serious could it? He had been healthy all of his short life.

A trip to another hospital led to another wave of terror.  Now we were told new things. We heard diabetes again. We heard brain damage, heart attack, stroke, kidney damage, and “if he makes it through the next 24 hours.”

That was almost 15 years ago.  Someone missed checking his urine or blood during the first visit to the emergency room.  It almost cost my son his life.

Today we have insulin pumps. rapid insulin, continuous glucose monitors, and sensor augmented pumps.  We have meters that read bg levels in under five seconds but still we have children literally dying because a diagnosis of diabetes was missed.  A routine test of urine for sugar or ketones is not done when they are checking for everything else.  Doctors assume that its flu season and the child must just have a bug.

Its not their fault.  We feel that it is when its our child but they have to know so much and what ails the human body can be such guess work.  They could help themselves and our children however if they remember to add that one little screen to routine blood or urine work-ups.  A stick in urine will still show the presence of ketones.  Asking any parent of a child with diabetes how long it takes.  Its a matter of seconds and the urine sticks are cheap. ketostix_intensity

In 15 years a lot has changed.  Our meters no longer take 30-60 seconds to produce a reading.  There are other background insulin options besides NPH.  Insulin pumps are now so smart that they can talk to continuous glucose monitors.  Continuous Glucose monitors are no longer items that are blinded and reserved for only select hospitals.

Type 1 diabetes is finding itself in the mainstream media.  Insulin pumps are being shown and discussed in various television shows.

Despite all of these strides ahead, children are still dying.  People do not know what to look for.  As a parent, I didn’t know what diabetes looked like or even that I should be looking until the signs were literally posted right in front of me.

Healthy children get sick but they don’t need to die.  We need to work harder to get the word out there.  Families should not suffer this pain. No one should die or suffer the damage of undiagnosed type 1 diabetes in 2015.

 

Make this month’s Hallmark Holiday Truly mean something!

Maybe it’s because I am getting older.

Maybe it’s because every month there seems to be some occasion that is asking for access to my wallet.

I am sure it is a combination of the two.  We literally have only just finished putting away everything from Christmas so another occasion is just too much for me to handle so soon.  I cannot get excited about more chocolates (I still have to lose the weight I gained from all of last year’s chocolate) or an overpriced card that says the things we should be sharing on a regular basis.  I can get excited about saving the life of a person with diabetes however.

For the third year in a row, the Diabetes Online Community has come together to help the IDF’s Life for a Child Program.  The idea is that a dozen roses cost $60.  $60 would cover one year’s worth of insulin under the IDF’s program.  Since no one wants to see anyone end up in the dog house for not giving your loved one the required flowers for Valentine’s day, the idea of “spare spare a rosea rose” was born.

Give your loved one 11 roses.  Spend $55 and then give that extra $5 to the IDF.  That $5 donation will last a lot longer than the rose.  With a lot of TLC, I am guessing you will only get a week out of the roses and a day or two of goodwill.  If you spare a rose you will get the week of seeing those 11 roses blossom, but a child will get one month’s worth of insulin and your sweetheart will know how much you care about others and which might be worth an extra week of goodwill from him/her!

This year its easier than ever to get involved.  I just made my donation as I was finding all of the links for this post! You click on the donation page, choose the currency you would like your donation in (you have a choice!!), decide if you want to make a one time or monthly donation, decide how many roses you are willing to forfeit for a great cause (one? two? the entire dozen?), and finally choose how you want to pay.  You can pay from your PayPal account, a credit card, or a bank account.  It really is that simple to save a life! You can even share this idea with your office and create an office campaign.

If you are like me and not a big fan of February’s Hallmark Holiday, I encourage you to turn it into something meaningful and become a part of the Spare a Rose, Save a Child campaign.  Tell your loved one how important they are to you and then show them how much you care about others by donating a rose (or twelve) to save a life!

To learn more about the Spare a Rose, Save a Child campaign, please check out these frequently asked questions.