Tuesday, April 8, 2014

In Life With Diabetes, Small Medical Advances Aren't Small At All - Nor Are They Gadgets~

Gadget: A mechanical contrivance or device; any ingenious article
1. A small mechanical  device or appliance 
2. Any object that is interesting for its ingenuity or novelty rather than for its practical use.
Synonyms: Contraption, whatsis, dohickey, thingamajig dictionary.com
Insulin pump: A pump for delivering insulin in order to achieve tight blood sugar control and lifestyle flexibility while minimizing the effects of low blood sugar (hypoglycemia). The pump is composed of a pump reservoir similar to that of an insulin cartridge, a battery-operated pump, and a computer chip that allows the user to control the exact amount of insulin being delivered. The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (or needle) at the end through which insulin passes. This cannula is inserted under the skin, usually on the abdomen. The cannula is changed every 2 days. The tubing can be disconnected from the pump while showering or swimming. The pump is used for continuous insulin delivery, 24 hours a day. The amount of insulin is programmed and is administered at a constant rate (basal rate). Often, the amount of insulin needed over the course of 24 hours varies depending on factors like exercise, activity level, and sleep. The insulin pump allows for the user to program many different basal rates to allow for this variation in lifestyle. In addition, the user can program the pump to deliver a "bolus" during meals to cover the excess demands of carbohydrate ingestion. The pump is currently the closest device on the market to an artificial pancreas.”  medterms.com

YEP, nothing novel about an insulin pump - especially if you're the person who's attached to it. And the same can be said for Continuous Glucose Monitors and the accuracy of glucose meters and test strips. 
Dear Elisabeth - 
I read your article in the New York Times, "Even Small Medical Advances Can Mean A Big Jump In Bills.  I’ve marinated on it for a few days and honestly, I’ve struggled with my response.  
I agree that the cost of diabetes and diabetes technologies is high (and has always been in the 36 years that I've lived with t1 diabetes,) and I'm well aware that diabetes is BIG BUSINESS. 
I find the cost of diabetes to be incredibly expensive - even with insurance - And I worry about my financial future. 
I worry about everyone living with diabetes having to deal with the same issues and concerns that I do. The financials keep me up at night. And I believe that things need to change regarding the cost of living with diabetes. 
I hesitate to start the paperwork on a new pump or CGM (Continuous Glucose Monitoring system) with my insurance company because of all the work it requires - And I'm worried about the out of pocket expense.  

BUT, as someone who hasn’t had a day off from her type 1 diabetes in 13,230 days and who knew many of the casualties of the Diabetes Dark Ages by name and personally, I'm here to tell you that my quality of my health and the quality of my life has improved greatly over the years since the advent of diabetes technology. 
And I know that my future good health depends on diabetes technology, highly engineered insulin and anything else that:
  1. Keeps me alive
  2. Reduces the risk or helps to limit future diabetes complications
  3. Gives me a better quality of life with diabetes.
In your article you stated: That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific. 

I found that statement to be callous and sensationalized and a huge over simplification of the many benefits of diabetes technology - Actually, you glossed over the benefits, BIG TIME.  
But I did and do relate to the frustrations re: to the integration and purchase of diabetes weapons. 

Still, make no mistake - Glucose meters, test-strips, Insulin Pumps, CGMs, fast acting insulin, etc., are weapons when it comes to living with diabetes - crucial ones that help us navigate the ever changing terrain of the diabetes battlefield. Without them, we'd lose the D war. 

Elisabeth - Your article made it seem as if people with diabetes didn't need or benefit from D technology  - And that's not true. 
Here’s the thing: Unlike many chronic illnesses, a large portion (8,757 hours  a year - give or take a few hours) of my type 1 diabetes care is in MY HANDS. 
So yes Elisabeth, people with diabetes absolutely need all the help we can get! 
And people with diabetes need glucose meters that provide us with graphs that chat with both our insulin pumps and our CGMs - Glucose meters and test strips that are accurate in order to properly calculate insulin via pumps, shots or CGMs and we and require fast acting insulin that quickly correct elevated blood sugar and allow us to eat when a meal is ready, instead of 20 to 30 minutes after taking it. 
And those people with vision issues because of diabetes need and require glucose meters with an audible voice. 

Personally, I would NEVER entrust my life, my health or my future health to mere gadgets Sidebar: Please refer to opening paragraph for the definition of the word gadget. 

Life and life with diabetes is far to complicated for novel gadgetry. 
Nobody living with diabetes and regardless of the type would rely on simple gadgets - But it would be great if we could. 
For those of us who remember The Diabetes Dark Ages, the time before insulin pumps; CGMs and glucose meters, life with diabetes had less precision, less flexibility and was more complicated - And led to more diabetes complications. 
We tested urine instead of blood,(disgusting and far from accurate,) had only a few types of insulin to choose from. And as far as the diabetes diet back then, it was anything but flexible. 
God, we would have given anything to have diabetes technology and fast acting insulin available to us! 
Technology like insulin pumps that allow for the customization of insulin delivery and more glucose meters/test strips and Continuous Glucose Monitoring systems and the advent of  analogue insulin .
The creation and availability of analogue insulin changed our lives for the better and allowed better glucose control, i.e.,blood sugars and meal time flexibility
All, key weapons for those of us doing battle with diabetes on a daily; yearly, weekly and decades, basis.

In the 1980’s, when my family and I received our first glucose meter - which cost hundreds of dollars; wasn't covered by insurance and was shared by the whole family shared, my parents, (my dad had t1) sister, (also a t1) and I had to meet with our pharmacist to learn how to operate the meter. 
The meter was the size of a VHS tape, took 3 minutes to calibrate and had a 44 page instruction book. There was nothing portable or convenient about it - And it was far from accurate - But it was more accurate than urine testing - And we were grateful for it.
A few years after we purchased our first meter, I lost 2 of my aunts to type 1 diabetes- they were in their early 50's. 

And I believe that if my older sister Debbie had diabetes technology available to her when she was diagnosed as a child( in the late 60’s,) or even as a teen, she wouldn’t have died from diabetes complications. Complications including; heart attacks, gastroparisis, multiple strokes and kidney failure, 22 years ago at the age of 34. 

I miss my big sister and I think about her every day - And I wish that she would have had the diabetes technology that I have available at my finger tips today - And clipped to my hip since 2002. 
And I will continue to advocate for people living with diabetes - And I'll fight tooth and nail to make sure that we've left the Diabetes Dark Ages forever. 
Kelly Kunik
t1 Person with diabetes for 36 years.


Laddie said...

Well done, Kelly, and thank you for representing me and all other Type 1's in your letter.

Laddie said...

Well done, Kelly, and thank you for representing me and all other people with Type 1 Diabetes.

On a less serious matter, a lot of Blogger blogs are now using numbers to prove we're not robots. I personally can actually read those and have already "flunked" the letters 4 times trying to comment on this blogpost. Arg!

Unknown said...

Well said. Thank you for advocating for my son and for all T1's. You are awesome!

Carol said...

Kelly, thank you for advocating for me - type 1 dx at age 5 in the 1960's. Like your sister. I remember the Diabetes Dark Ages. I began to lose my vision to proliferative retinopathy in the 1980s. I went on an insulin pump in the 1990s and my retinopathy has stabilized. The thought of an ignorant person labeling an insulin pump as a "gadget" - makes me angry. Thank you again for speaking/advocating for me. I love your blog and read every post.