Dear Government Person - Not Your Secretary!

As most of you know I have Two Type 1 children (out of five) who have had their pancreas hijacked by little evil invaders destroying their beta cells leaving them without insulin.
The little one, diagnosed at 18 months, who is now 6, is using an Insulin Pump to deliver her insulin. The oldest one, is simply too vain at the moment to consider pump therapy.

This post was inspired by a post I read today by Jamie Naessens on Diabetes Mine discussing the Canadian Health Care System. Great post, I recommend you check it out.

It got me thinking about the provincial difference. I was born and raised in Ontario, Canada. We moved out here to Alberta 7 years ago. Little did we no that while living out here we would be  challenged with the onset of Type 1 Diabetes for 2 of our children. 

To get to the point, the contrasts between provinces became really apparent when I heard Ontario providing all Children under 18 years of age being subsidized for pumps and supplies. Meanwhile, I am making car pump payments on 2 new Insulin Pumps in the same Country.  I immediately dug my heels in, and wrote a letter to the Provincial Minister of Health.  I honestly doubt he read it. As I received a response from an unknown individual, assigned to respond diplomatically to such emails and letter inquiring about the discrepancies from province to province.

Here is a paragraph from the email response I received:

The Government of Alberta is committed to providing Albertans with access to quality health services. Decisions to publicly fund health services must be supported by evidence regarding their potential health benefits. Alberta Health and Wellness is currently undertaking an assessment of insulin pump therapy. This assessment will provide evidence on safety, efficacy/effectiveness, cost effectiveness and other relevant information of insulin pump therapy compared to multiple daily injections. This assessment will guide our overall approach to insulin pump coverage.

It was a very pleasant letter, it did say that they have a number of income based programs; of course I work and don't qualify for these. I know stop your whining (In case you were thinking that) 

Okay, so they are evaluating the evidence, okay......so now what?  The cynical side of me thinks; to look for cheaper methods, so they can not provide pumps in Alberta, which is a huge up-front cost but the best therapy for children in terms of hypoglycemic management, blood glucose control, and oh yes, quality of life. Phew, that was a thought-full!  But seriously hurry it up a little, because having three car payments is killing me. Not to mention not being able to utilize life saving technology for our Type 1 Child who has no hypo awareness.

I have yet to write back.  I am new at this advocacy thing, which is surprising since I have been Type 1 for almost 30's. 

I would like to investigate ways to be heard, political avenues to pursue, how in the heck do I make change in a sparsely populated country for Type 1's?  Basically how do I cut through the "red tape"

But, I am a little busy;  working full time, raising five children, and managing three Type 1's.

Trev

PS:  If you are curious, this is the main portion of my letter to the Minister below:

It is perplexing that the richest province in the country has its
citizens paying for essential supplies, new insulin, insulin pumps and
supplies (out of pocket) to prevent complications down the road that
will inevitably save the government money.

The diabetes coverage has improved in other provinces dramatically, what
is the delay in this province?

In any event, I am aware this letter will likely be screened, it is
however my hope to have it forwarded to the Minister of Health.

My main purpose is to advocate for better coverage for type one
diabetes, and those parents and individuals who choose the best
treatment available based on the most current clinical research.

I firmly believe this will save the health system millions of dollars in
the long term.

Kindest regards

Trevor ---------

The 40 Year Old....

"Self Portrait"

Almost got you to say the "V" word didn't I.  

Besides I have two years before the big 4-0. The title was more catchy then the 38 Year old Paper-Boy.

No, I am not on drugs, or intoxicated, or having a low blood sugar.

 Get this; I spent Friday night doing my oldest daughter's paper route and I thought of the title; "The 40 Year Old Paper-Boy" resembling the movie title "The 40 Year Old Virgin" (which is hilarious by the way)

So,  I get home from work and the majority of my family are incapacitated due to a relentless head cold.   With the exception of my 10 year old, the toddler and I,  who were healthy enough to move and function.

The first thing I notice is the bundle of newspapers, and sears catalogues awaiting to be delivered for a very cheap, borderline exploitation wage.  Friday is paper route day. So, by default the job landed with the 3 able bodied family members.

I immediately took charge of the situation. Abby, "get dressed" we are doing the route. Off we went.

I drove, with the hatch of the mini-van open, threw a Princess movie in the vans DVD player for the wee one, and we proceeded.

What does this, if anything, have to do with diabetes?  You ask...

More then you may think.  For instance, prior to the days of pumping, or MDI and even basal rates, this adventure would have been far more challenging.

Current therapies enable PWD to fit diabetes into their lives not the other way around. So instead of coming home, timing my meal to match my long acting(like in times past) I arrived, tested, grabbed a quick bite, took a shot of Rapid (I am on a Pump Vacation) and arose to the challenge and task at hand.

I guess I am grateful that we have newer technology, pumps, CGM's, awareness, knowledge, that we can do what we want when we want to, even if that means, becoming a 38 year old paper boy for the evening.

Happy Saturday!

Trev

PS: If you are wondering about my self portrait, read the post on Wego Health

Are You Courteously Assertive?

"My Assertive Teenage Type 1"

Many years ago, lets say, 15+ or so, I was referred to meet my first endocrinologist, as my family physician felt it was time to pass the care of my diabetes over to the specialist.

Prior to this appointment I had it in my head, after doing much research over the net of course(yes it existed back then) that I wanted to go on the "Run and Shoot Method" or in modern terms, a MDI regime. 

I made my merry way to meet the new Endocrinologist.  I was greeted by his Resident(A physician training to specialize) who's job it was to take a history and do a brief physical exam.  That took all of 10 minutes.

Then entered the new Endo.  He looked at me and said. "So you want to switch up your insulin?" I replied "Yes I do because, " He abruptly cut me off mid sentence and said, "That's not a good idea, you need to stay on your current insulin."  There was a long awkward period of silence, you know, like the elevator type, very uncomfortable.

He went on to ask or more like dictate, the goals I need to shoot for, asked a few other questions regarding; eyes, feet, the usual diabetes stuff.  I honestly shut down all incoming communication at that point in the interview. Then, he stood up, handed me a lab requisition and said, "keep taking what you take and see me in three months"

I was shocked, hurt, mad, and felt defeated.  My plan to go on a "current" more updated insulin regime was shot down.  I didn't handle the rejection very well.
Here I was, a motivated patient requesting better therapy, and suddenly I was shut out.  Totally powerless or so I thought at that moment.

I assume you want to know what I did next.  He had to go!  Just pictured in my head the board Room scenario's for those who have watched Mr Trump point and say, "Your Fired!"on the Reality show the Apprentice.  Ah if only......well back to the story.

I "fired him" well, mentally I did.  I waited a few weeks, phoned my Family Doc and told him I wanted to be referred to somebody who had a personality, and the ability to listen.  I also, in a courteously assertive way, asked him to prescribe the Ultralente, Novorapid regime I wanted to try. He reluctantly wrote the scrip, I think because he knew I wasn't going to leave with out some change in my therapy.

Six months later,  I finally met my new Endocrinologist; which I might add was the most important visit of my diabetic life. Not kidding. This lady was progressive and up to date, she listened, empathized and was totally okay with the regime I was on, and said, "You know, I am starting another Type 1 fellow on an Insulin Pump next week, are you interested in pump therapy?"

During my Internet search I had read some stuff on pump therapy, but hadn't considered this myself.  But that was before she made this amazing proposition.
I said to her, "That is the most current therapy available, yes I'm interested"

"My Old Medtronic Pump"

One month later I was connected and pumping insulin. I thought to myself, wow, I don't have to take a shot every few hours, three days shot free! It was a very exciting time in my diabetes life. Of course the trial and errors, basal rates, and ratios needed sorting, but my life changed.  I was in control of the Mr D, not the other way around.

In retrospect, things could have turned out different. I could have gone back to the first Endo 3 months later, he may have tweaked or changed my regime, and may have mentioned the pump at a much later date.

I chose to be courteously assertive with my family physician, I didn't demand or order him, I was simply assertive enough to not take no for an answer, I wanted to better my diabetes treatment, and that is what I accomplished.

I believe that we all have that ability to be assertive, don't give up, we have information at our finger tips, and it is up to you to ask for what you want, and get it!

Being Courteously Assertive certainly paid off for me.


A little FYI below:

World English Dictionary

courteous  (ˈkɜːtɪəs)  — adj polite and considerate in manner assertive  (əˈsɜːtɪv)  — adj 1. confident and direct in claiming one's rights or putting forward one's views 2. given to making assertions or bold demands; dogmatic or aggressive