Costly Disease

Recently someone I know was diagnosed with diabetes. Because this person is an adult, they have yet to decide if they are Type 1 or Type 2.  The process of finding an exact diagnosis exceedingly slow and painful for me to watch.  I want to see this person feeling better and back on their feet. I want them to be able to learn how to take care of themselves and reclaim their lives.
In my desire to help, I have offered tips and information on treatment options. I am fully aware that some doctors prefer a  tried and true older method of care in part because of the costs associated with the best care  options.  I know that this person would want to have the best life possible.  I never thought a lot about the cost factor. I always tend to look at quality of life.
I am lucky.  My son has insurance that covers test strips and insulin.  We live in a province that covers his pump and supplies until he is 25. The only thing that we have to worry about paying for is a continuous glucose monitor and at the moment I am still working to convince him that he wants one.
I also have great credit and have been able to purchase his supplies out of pocket on my Visa card and then pay my Visa off when the reimbursement cheque came in.  Not everyone is so lucky.  In the case of this person who has diabetes (type unknown), there is some insurance but no direct billing.  All strips and medications must be paid up front.  This family does not have a credit card to use to help delay payment.  They have to look at paying everything in cash.
The cost of diabetes supplies was a huge shock to them.  The idea of paying $1 every time this person had to check their blood seemed ridiculous. Their answer was that testing would be cut down or non-existent once the doctors knew what was going on.
My heart broke.  Its not that simple especially if the diagnosis is Type 1(which is a strong possibility).  To stop testing puts this person at risk for so many things.  They do not yet understand how vital the information from that test strip will be for their daily lives.  They do not yet know that testing must occur before eating, during the night, before exercise, and even before driving.
This family now has to learn how to deal with a very serious disease that will bring stresses into their lives that were previously unknown.  There is relief for them in knowing what is going on health-wise but the financial burden is something that they have not anticipated.
We live in a country that is proud of its public health care system.  This family can recieve a diagnosis without worrying about spending a small fortune or having the proper insurance.  They cannot however anticipate any help to pay for the medications and supplies that will be needed to stay healthy after a diagnosis is finally made and that is the biggest tragedy of all.
health and money

My Petition to Mankind

Today’s blog week prompt challenges us to come up with our own online petition. There have been a few petitions circulating lately so if I had my choice, what would I petition for?
That is a real challenge.  I have read a few posts asking for greater meter accuracy and even petitioning test strips to find their way to the garbage can. I would of course love to see both of those things happen! I would also love protection for all children with diabetes in schools. I would love for cheaper air fares that would allow families to travel with greater ease to diabetes related events.
I think the thing that I truly want more than anything else is access to devices and supplies for EVERYONE!  I don’t care where you live in the world, you should have access to enough insulin, syringes, test strips, pumps, and CGMs. I cringe when I hear of anyone who can only test once a day (or less).  I cry when I hear of people barely able to afford insulin. My heart breaks when people have to choose which child will have an insulin pump because both children have diabetes but they can’t afford a pump and supplies for two children. That just should not be.
So pharmaceutical companies, governments of the world, humanity, I am begging of you…
  • Please ensure that everyone who needs insulin has access to  the best available insulin no matter where they live.
  • Please make sure that everyone, no matter where they live, have clean and sterile syringes.
  • Please ensure that all people living with diabetes have adequate access to the most effective glucometers and as many test strips as they need to manage their diabetes care to the best of their abilities. 
  • Please ensure that the most innovative insulin pumps are available to anyone with diabetes, anywhere in the world, who wants to use them.
  • Please ensure that Continuous Glucose Monitors are available to everyone who wants to use them as another management tool no matter where they live or how much insurance they have.
  • Please ensure that all people living with diabetes have access to the best possible tools, education, and devices regardless of insurance, race, financial background, or geographical location.
No one should have to make the choice between food and life, between electricity and insulin.  Let us become a humane and just society offering the best possible healthcare to all of the Earth’s citizens not just a select few.
A mother who cares.

Twice a week should do it!

Over the holidays, my boys  and I were sitting at our kitchen table enjoying an after supper conversation.  My youngest son happened to look at a drug store receipt on the table and said “$160 for a month of test strips? That’s crazy!”

I quickly explained that sadly that did not cover a month’s worth of testing.  I also reminded him that there was still the cost of insulin and pump supplies to add to that monthly diabetes care bill. 

He was completely incensed.  He was adamant that he would NOT be spending that kind of money on his diabetes care when he was older.  This was insane by his calculation.  No one should have to pay such crazy amounts to stay alive.

He decided that he would have to seriously cut down his testing when he was forced to cover his own supply costs.  He informed me that when we went to diabetes events and he filled out cards, they always asked if he tested only a few times per week.  He had to state that he was the child of an obsessive tester and tested closer to 10 times per day.  My young son felt that these cards(geared to people with Type 2 diabetes) justified him not testing in his adult years.

I groaned and tried to explain to him that a lack of testing was not an option to consider.  I had invested in a Disability Savings Plan for him and reminded him that it would give him some money towards his diabetes supplies when he was older.  I also encouraged him to keep contributing and taking advantage of the free government money.

This did nothing to pacify him.  He remained horrified at the cost of his care. He decided that it was the job of the government to cover his costs.  If they did not pay for his supplies, he would die. It was simple.

I wish it was that simple. I wished that governments actually cared. His throught processes scare me at times. I pray that he does have good coverage when he gets older…and more importantly that he uses the tools available to him to keep himself healthy.

You just never know

Recently a friend shared her daughter’s experience and I wanted to share it with you.  Its a fabulous reminder that no matter what we think or do, Diabetes is always with us.  We must always be prepared and never let our guard down.  There is no situation in which it is okay to forget a meter, insulin or extra glucose.  Things happen and when Diabetes is also in the room, normal things can be dangerous!

Hello Barb. I wanted to let you and your other readers know about something that happened to my daughter. We were staying at a hotel in Toronto last weekend. She went to the pool area for a bit, then got stuck in the elevator for 50 minutes. We rode it up to our floor, then the door wouldn’t open, then it continued up and down without opening for 50 minutes. She was in contact with the hotel people with the emergency phone and the hotel contacted our room to let us know what had happened and that they were getting her. But…it took 50 minutes. After she was released from the box she wanted to walk the 7 flights back to our floor, and the security person escorted her. The hotel went to great lengths to make up this inconvenience to us. I hold nothing against them. My reason for sharing this is a reminder that diabetes must be considered for everything we do. Even something as innocuous as an elevator ride…you don’t know how long you could be in there. Now I have another time to ask her if she has her glucose.

This experience sent shivers down my spine and I am so grateful that it was shared.  How often have we run out somewhere for just a minute without worrying too much about supplies but how often can we get sidetracked by friends, stuck in traffic or caught up in an emergency that does not allow us to get home when planned.

Diabetes does not care what situation you are in. You must always be on guard. You must always have your supplies…no exceptions because, well you just never know!

The Full Meal Deal

“Isn’t today the day that you need to change your site?”

“I don’t think so.”

“Let me see your pump. I am sure that you are due for a site change. If not today then you are overdue.”

Begrudgingly, my son handed me over his pump. The first thing I noticed was that his battery was stating that it was dying and almost dead. “You need to change your battery…like now. Its on its last legs and I was right! Your site change is today.  Get the stuff out and get the site changed.”

My son grumbles and heads out of his room. 

“What are you doing?”

“I need to get some insulin.”

“Holy cow, you are going for the full meal deal tonight! You have a dead battery, no insulin and a dead site!”

I”ts not a dead site. The site is fine.”

“Its due to be changed its a dead site.  Time for a clean slate!”

Soon we had everything new but sadly he was still high during the night. Can’t win them all with Diabetes in the house!

Enjoying the outdoors…with diabetes!

Getting ready for a day on the snow…

Sled is on the trailer–check
Helmets are in the truck–check
Gloves are packed–check
Warm hats for under the helmets–check
Long underwear–check
Woolie socks–check
Good boots–check

Now for the pockets…
Lip balm–check
Cash just in case–check
Cell phone–check
Turned off the data so you don’t kill the battery searching for Internet–check
Glucose tablets–check
Syringe in case the pump dies–check
Hand cleaner–check

I was so busy filling my pockets with things that I did forget a scarf for my neck. Thankfully it wasn’t too cold so my coat and three shirts kept me warm.

And so we headed out for a day on the snow…with diabetes coming along for the ride of course!

My Purse

Since its “wordless Wednesday” I figured that a picture of just some of the contents of my purse would speak volumes for me.

Forgot a diabetes supply? Never a problem in a house where D lives

This evening we have a guest who has Type 2 diabetes.  He is very conscious of his diet and testing his blood but because of uncontrollable circumstances, his meter did not arrive at our house with the rest of his things.

I heard Larry tell him that he was sure my son could help him out.  He knows that we have a number of spare diabetes supplies so finding an extra meter or lancet would most likely not prove difficult.

After overhearing the conversation going on the living room about supplies, I turned to my son and asked if he could help the gentleman out. He didn’t think that would be a problem. What type of meter did he want?  I suggested he grab one of the meters that we rarely use so we didn’t mess up logging the wrong person’s readings.

My son then asked “What type of lancing device?”

I was sure it really didn’t matter. 

“Well, there is one for the hand or the finger?”

The finger would be preferable.

“Hmm, well there is a bigger one or a smaller one?”

Oh my! I never knew there was such a variety! He calmly told me that there was. I told him that I would leave it in his capable hands.  I just wanted a lancing device with new lancet, a meter, and some strips please.

This is just the first few meters and lancets I found in his drawer!

Our Pharmacy, Our Friend

I have really come to believe that your pharmacy is the most underrated member of your diabetes team. We often take them for granted but live to complain when things don’t work out as smoothly. They hold all of the power. They can give you the devices you require or they can make you squirm until you get them.

We were exceptionally fortunate for the first 10 years that my son lived with diabetes.  We had the best pharmacy around. They are a small pharmacy that gets to know their clients and always work to do the best by them. 

They showed us new meters to try in the early years when I was having trouble finding the perfect fit for us.  They helped with insurance forms and government paperwork to ensure that my son always had everything he needed.  They became our friends.  We spoke of our children.  We offered help to each other when it was needed.  They truly cared. 

We now live in a larger area and go to a pharmacy that is not nearly as personal.  One of the pharmacists from our old pharmacy offered to “hook me up”  with a pharmacy in the general area but it is a bit out of the way so I have continued along with the place ten minutes down the road.

It has been a bit annoying having to go back to submitting my own slips each time to have the money reimbursed for my son’s supplies but that is what happens when you are no longer in a small community that knows your son’s insurance provider.

Yesterday brought me hurdling back in time to when we first moved here.  Changes and a pharmacy that did not know us equated to a lot of trauma. Its been a year but I still won’t say that they know us yet.  I still go to the pharmacy on a regular basis and spend an obscene amount of money on insulin and test strips.  They are quite nice but its the bureaucracy that they seem to be swimming in that we did not have to experience before.

For example, last night, it was a Sunday and I figured a perfect night to get my son’s supplies reordered.  Everyone else thought the same thing it would appear and the counter was very busy.  I asked for AccuChek Mobile test strips.  They didn’t have any.  They didn’t know we, or anyone else, were using them and the woman who orders them hadn’t restocked. She questioned if my insurance would cover them. I said that they have always covered any strip we chose to use so I was not worried about these ones. She then state that I could get them the next day which was fine by me.

She went on to tell me that my son’s prescriptions had expired.  They had been telling me this for the last three or four times I had gone in.  Once again I explained that no, the prescriptions were all refilled by his doctor in April.  They said that some of the prescriptions were refilled but the doctor had not specified that he needed insulin so it was not renewed. 

Okay, they said that he needed pumps supplies, syringes and such but not insulin? According to the technician, they had missed the insulin and his prescription had expired. They would give me more but I had to contact his doctor and get this prescribed.

I left shaking my head.  This was just weird. I could not imagine them missing insulin.  Bright and early the next morning, I was in contact with the hospital and asking about the prescription.  The secretary pulled my son’s file and said that they had requested insulin.  She resent the complete prescription to the pharmacy and asked me to call them. If they didn’t have things straight then she would call.
I waited until I was sure that the pharmacy was open and I placed my call.  After five minutes of confusion, checking files, checking the fax and finally checking with the pharmacist, she assured me that yes, they finally did have the insulin prescription.  All was well and he was good to go for another year.

My nerves! I know I was terribly spoiled before. I know our old team was just too good to us. I understand that this is a larger center. I understand that I have made this choice because of convenience.  I guess it could be worse but boy do I ever still miss the old pharmacy team. We will see how things go. I may have to take that longer drive to a different pharmacy yet.

Are you ready?

Every day we are hearing about more and more natural disasters.  There is flooding in Quebec and Manitoba. Wildfires are burning out of control in northern Alberta.  There are tornadoes going through various parts of the US.  Tsunamis and earthquakes have hit in places we would not have thought about previously. 

This means that those of us who have felt safe and believed that we lived in an area that could not be impacted by Mother Nature are being given a wake up call.  Since Diabetes moved into our house, we have been hit by two major storms that cut off roads and threatened power.  How has it changed me? It hasn’t.
I am one of the many people who are not ready. I have an emergency supplies list on my website.  I know that I should create a box to be taken at a moments notice.  Evacuees in Slave Lake tell that they were given less than 10 minutes to get out of their homes.  Would that be enough time for me to grab insulin, pumps supplies, test strips and more? No.  We are way too disorganized for that.  It is time for me to change that though. Moving a lot further up my “to-do” list is make that box. Mother Nature will not be concerned if I do it later or do it now.  If she decides to take my home she will do it on her terms not mine. 
As we watch the news, I can’t help but wonder how many other people living in these disaster ravaged places have also put off creating their emergency box?  Thankfully Tu diabetes has created a list of people who are gathering supplies for people like me who thought that this could not happen to them. The JDRF in Missouri is also collecting unopened diabetes supplies that can be shipped in care of:
Jennifer Conter-Jones
(Development Coordinator JDRF Ozarks)
560 Peacock Street

Rogersville, MO 65742  USA
 The diabetes community has a large heart and I know that many of us will donate and help as we can. The thoughts and prayers of my family and so many others go out to all of these people devastated by what has happened.  In the meantime, before disaster strikes my area, I think its time to get our supplies in order just in case, Heaven forbid, anything like this ever happens near us.