The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

There has been much discussion of late regarding insulin which is available at places like Walmart for a very reasonable expense.  Some are saying/reporting that people died by going on that particular insulin which they were forced to do because of the cost of the insulin usually used has skyrocketed out of control.

I’m not here to argue this point; sides are drawn and the battle to be right is occurring in many places all around us in the diabetes community.  What I would like to do is make a few points for all of us to think about, while we wait.

What we are waiting for is my first point——there is absolutely no reason on earth why anyone should stand idle and not keep up the pressure of advocacy at the boneheads responsible for these out of control insulin prices.  That fight needs to continue and needs to continue constantly.  There is absolutely NO REASON for any individual with this disease to not be given the insulin, THE BEST INSULIN, they need to survive.  That point needs to be clear.

Whether some like it or not, believe it or not, many people have survived using what is available at a lower cost. Before many of the diabetes tools in our diabetes tool box now available, there were limited resources.  When the insulin ‘hit’, sometimes it was like a crashing airplane.  Crashing was as much in our discussions as high and low blood sugar.  It was part of what we had to deal with, and what we had to do and with proper medical professional help, we charted the best course available.  Guess what? Some people died back then using this method.

Guess what?  Some people also have died because of something to do with their insulin pump.  Whether it malfunctioned or was not used correctly, is not always known.  People also die when a car malfunctions or is used incorrectly. We cannot stop driving anymore than we (or our kids) can stop taking insulin.  In the latter case, stop taking insulin is a death sentence.

Any fool can go out there and say that this is much ado about nothing because an alternative is available at Walmart.  It’s a stupid statement at best. TOTALLY AGREED. But……..BUT, until such time that this can get fixed, people with diabetes need to take insulin. And to change ANY course of treatment must have, and needs to be done, under medical supervision only.  There is no WAG (wild-ass-guess) here because that can cost you your life.  ANY CHANGE TO YOUR TREATMENT SHOULD BE DONE UNDER MEDICAL SUPERVISION ONLY.  PERIOD.

Remember the discussion how treating this disease is very personal and is different with each person? That there is no ‘one size fits all’.  Even with medical inclusion, we still have to pay particular attention to everything diabetes.  When you change one thing, it changes many things in one’s life.  It’s the truest form of real-life-domino-impact that one will ever see. So if some people are making the lower insulin work for them, are they wrong? If some people want the fire to get turned up in Washington so people can use the insulin they want; are they wrong?  What happened to one person’s treatment does not necessarily have to be the same as another’s?

I’m seeing a ton of energy from people trying to convince the world that it’s better to have nothing, than use the less expensive insulin available.  That’s just not true or my daughter, and many others, would be dead already because we were using that-type- ‘cocktail’ for years.

Is it a solution? No. It’s a stop-gap measure until the folks from Washington can get their heads out of their……let’s just say, the ground. Want to argue that point, argue it with Washington folks because arguing with those who do not have the power to change anything, is wasted energy.  No one should want or have the need to be right about this, what we all need is to see this resolved.  The pressure needs to stay with those who can, and who must; rectify it once and for all.
I am a diabetes dad.
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Brittle Diabetes?…….and Other ‘Fun’ with Names

I have always found some of the terminology used in our diabetes world a bit…….odd.  How many of us have been in the company of strangers when our child, who is a good distance away, checks their blood sugar and shouts to us; “I’m high again!”  Funny to watch the strangers hearing this and shaking their heads in a ‘tsk-tsk’ shame on us and our drug addict kids.

Not a big fan of the Type 1/Type 2 naming club either.  Now I also think that we can waste millions of hours in trying to change it and many have certainly tried.  But I am not so sure I have ever heard of a Type 1/Type 2 Cancer, allergy, MS, cystic fibrosis, flu or anything else for that matter.  Type 1…..type 2…..really?  Nonfunctional Pancreas Diabetes……..or NFP………and Low-functional Pancreas Diabetes LPD….perhaps.  But truthfully Type 1 and Type 2 is surely better than Juvenile and Adult Onset Diabetes……what a mess THAT was…….right?

Another phrase I have always hated, never understood, and also lived with in one of our children is Brittle Diabetes.  Short version/definition is extremely hard to control diabetes.  Brittle sounds like if you drop it, it will break. Also interesting that it is the same name as a hugely high in sugar peanut-candy treat, don’t you think? It certainly does not describe what we went through.  Perhaps, ‘what-the-heck-is-going-on-we-never-sleep-she-has-no-idea-what-she-is-feeling-and-we-all-feel-out-of-control diabetes might be a better name although tad long I admit.

How about in your life? What diabetes phrases or words have had you scratching your head? Perhaps it keeps you up at night.  Or up in the early morning.  In the dawn….a dawn phenomena, oh wait………

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

A Meeting……I Should Have Known……We Have Work To Do…….What Say You?

surprisedAstounding. Mind-blowing.  Revealing.  Frustrating.

We have some work to do.  If ever I was reminded of that fact, it was last night.

I belong to a small group in my hometown.  We raise money for local causes surrounding diabetes needs.  In the scheme of things it is significant enough to make a difference to those entities we fund.  Not earth shattering but a difference none-the-less.  We work hard at raising money to help.

So last night we invited hospitals to “pitch us” on a project that had to do with diabetes, kids, and a significant impact in the community.

Here is what I heard.
Not one thing having to do with type 1 education.
Not one thing in helping kids with type 1 in any way.
Not one thing in helping adults with type 1 in any way.
Each proposed dealing with the growing obesity problem leading to type 2 and not one included defining and educating differences between the two largest groups much less the other types of diabetes.
Two referred to the ‘juvenile’ diabetes within their families.

To their credit, they all addressed a growing problem.
To their credit they all agreed to type one initiatives when I mentioned it.

This was a representation of our community health care.

And there it is.

Here is my question……if this is a sample of what is out there, and I do believe it is, what do we do about it?

Anything?

I look forward to hearing from you on this subject and please reply here at the site and not on the FB page so all can chime in.

I am a diabetes dad.

 

The Worst Kind of Diabetes is………

You Have a Job to do.

Diabetes Awareness month is November. 

We’re not going to wait.   Too many are getting it wrong now, today.  Do something today that could have an impact on Diabetes Awareness Month for 2012.  Ready?

The worst form of diabetes…….is getting it wrong.   Find a newspaper in your area and either email or send a letter.  Here is the copy of my actual letter that I sent to Mr. Fred Groser, Publisher of Newsday, here on Long Island; and I also sent to the Vice President of Editorial Services for Cablevsion—it took me 7 minutes and 37 seconds to do both.  If needed, take mine and tweak/edit as needed……but do it.

Dear Mr. Groser,

My name is Tom Karlya and I am an online writer about diabetes (www.diabetesdad.org and www.dlife.com/diabetsdad), active in many diabetes causes, and probably most importantly; I am a father to two children who live with Type 1 Diabetes everyday.

 As I’m sure you know, November is Diabetes Awareness month and I, along with thousands of people across the nation who are touched by this insidious disease, are writing to our local media to ask that should you run any stories about diabetes; PLEASE make sure you ‘get it’ right.

When referring to Type 2 Diabetes designate it as such; and the same with Type 1 Diabetes, or Gestational Diabetes, or to whichever form of diabetes you are referring.  There is so much misunderstanding and confusion about diabetes, help us educate the public to understand fully by being specific where needed.

Thank you for your time.  You can contact me directly or feel free to reach out to the Diabetes Advocates at info@diabetesadvocates.org; their website is www.diabetesadvocates.org; they will be glad to answer any questions you have about the different forms of diabetes.  Thank you for your support during diabetes awareness month.

Regards,

–Tom

Imagine if just 1000 people did this to two forms of media across the country this week getting ready for Diabetes Awareness month.  You can even cut and paste what I have given and tweak it. 

November is Diabetes Awareness Month and today …is…..is…..um……’help the media get it right in November’ day……..so let’s go.

If we don’t try to correct the problem, we cannot complain when they get it wrong.  Should you do it, send me a response to let me know the name of the newspaper and in what city and state.  This is an easy one, but one that can surely have an impact….let’s do it together.  ‘Don’t  do nothing’…….and do it today.

I’m a diabetesdad.