Welcome to a piece of our sweet journey of life. This blog is about our family life-- my husband, my type 1 diabetic kindergartner, my spunky pre-schooler, my newborn baby girl, and myself! Enjoy!

Tuesday, May 16, 2017

The Cost of a Chronic Illness

The second topic for #DBlogWeek is about the cost of a chronic illness.

When Michael was diagnosed, we were on insurance through my job.  It was okay-- and it was all we knew, so we couldn't compare it to anything else.  We got all of our supplies through a retail pharmacy at first.  This was the breakdown (found in this post):

"For a 90 Day supply of the insulin and other necessary supplies Michael uses, this is the breakdown:

Glucagon:  (3 kits)    $45.00
Pen needles: (6 boxes)     $135.00
Lantus (slow-acting insulin)    $135.00
Humalog (fast-acting insulin)   $135.00
Ketone strips (for urinalysis) (300)  $51.84
Lancets (to check blood sugar)   $64.78
Testing strips for blood-sugar meter (918 strips) $135.00  (thanks to an awesome social worker who worked hand in hand with our insurance company to make sure we could get the strips at that cost.  Usually, they are $50 for 50 strips). 

The insulin, the lancets, the testing strips are all required at that monetary level each and every month."

Later on, Michael got a CGM (continuous glucose monitor) and an insulin pump (we chose the Omnipod).  The CGM cost breakdown was this: "This piece of equipment (called a Continuous Glucose Monitor, aka CGM), along with it's necessary accessories (transmitter, receiver, inserters), cost us $542.00 to start-up, and it costs us $114.00 each month for the supplies. "

Once Michael got the insulin pump, some of our supplies changed.  More can be found in this post, but here's the basic breakdown:

"Humalog vials (we now use Humalog vials instead of Humalog & Lantus pen cartridges.  Michael no longer received multiple daily injections {MDI}, but rather receives Humalog all day long via his insulin pump.  We buy vials of Humalog and inject it into his pump every 3 days via syringe).  The cost of a 90 day supply of vials (3 vials) is $135.00

Glucagon (emergency kit-- 3 kits)   $45.00  (I don't buy this every 90 days, but these expire after a year, so I will be restocking some of the kits I bought last fall)

Ketone strips (for urinalysis-- 100 strips)  $17.00  (Again, I don't really have to buy these each time.  I can get up to 300 strips every 90 days, but can usually get by with just getting 100 strips). 

Lancets (to check blood sugar)  $64.78

Testing strips for blood sugar meter (918 strips)  $135.00  

When I order everything shown above, I pay about $396.78 to the pharmacy every 90 days.  Items that are not on this list include Lantus (slow-acting insulin) and pen needles.  Since he receives Humalog all day via his insulin pump, the need for Lantus is gone.  Also, since we are not giving him injections, we no longer have to fill the supply of pen needles.  I have a few spare boxes of needles in my cabinet, as well as some spare Humalog & Lantus pen cartridges for emergency purposes in case his insulin pump ever fails.  This is a recommended practice by the staff at Children's Hospital-- always be prepared for the worst. "

Once we started using the CGM and the Pod, we had to buy supplies through the mail for those items.  After we had used my insurance through work for over a year, we made the decision to switch to Aaron's insurance in January 2016.  

Switching to Aaron's insurance required that all diabetes supplies be purchased through the mail.  We saved a whole lot of money by doing this!  Michael's insulin (Novolog now instead of Humalog, and back-up Lantus pens in case of pump failure) are automatically shipped overnight at no additional cost.  They arrive in a cooler with ice packs and bubble wrap.  We pay $50 for a 90-day supply for each insulin.  This has risen from last year, but it's still a savings over what we were paying.  

We order lancets and testing strips through the mail as well.  These cost us about $50 for a 90-day supply.  I no longer get over 900 strips for Michael, but rather about 400-600.  With the CGM, we find it's okay to have a bit fewer test strips around.  

Our CGM sensors and our pods come through a Durable Medical Equipment supplier.  These items have greatly increased in cost from last year.  It costs us about $742.00 every 90 days for sensors and pods.

This year, our insurance no longer covers ketone strips, so I have to buy those myself in the store.  It's between $12-$20 for a tube of 50 strips.  

The mail rep on the phone one time told me that Glucagon is cheaper if we get it at a retail pharmacy rather than through the mail.  Our pharmacy of choice is no longer a covered pharmacy, but our grocery store pharmacy is, so I order glucagon from there.  They do not fill 90-day supplies, only 30 day supplies. For 3 glucagon kits at the grocery store pharmacy, it's $20.00-- so still a savings from the past. 

Diabetes is hugely expensive, and that's with pretty darn good insurance coverage.  But Type One Diabetes doesn't just cost money-- it costs peace of mind, and lifestyle habits, and dreams.  

The cost of a chronic illness is simply that-- chronic.  The cost is as chronic as the illness.  Michael is too young to understand that Type One can be a burden.  I ache for the day when he realizes this.  I understand that one day he will assume the role of Master of his diabetes and I will play a behind the scenes roll and try not to be a helicopter mom when he's grown.  But if I could take that burden away from him, I would!  I would do it in a heartbeat.  A heartbeat.  The cost of a chronic illness is that it took my little boy away from me-- it robbed me of the dreams I had for him.  It stole our spontaneous life!  It barged in and took up residence in our home and it will never leave-- even when Michael grows up and manages himself, my home will still stay stocked with whatever diabetes supplies I can purchase OTC and keep at the ready for my son.  The cost of a chronic illness is the future argument that Michael and I might have if he reaches diabetes burn-out.  Parents of non-Type One kids don't have to deal with that.  The cost of a chronic illness is sleep!  I will never again lay my head down on my pillow and sleep the whole night through.  Even when Michael is grown and on his own, I will still wake and worry if he's okay.  

The cost of a chronic illness, as I put it in 2015, is that diabetes can rob you.  Of money, of peace, and of freedom.  That's a pretty huge cost to pay. 

Until Next Time, 
Much love, Reba

1 comment:

  1. I find it so unbelievable to see the numbers all typed out like that. I mean, I know the costs, but something about seeing it there on the screen makes it hit harder.