Tired of the Undiagnosed T1 Entering DKA…….Roll Up Your Sleeves……Some Suggestions.

Roll up your sleeveThere certainly has been much activity surrounding DKA Awareness of late and that is a very good thing; the reason will always sting, but good that change could be coming.  If we are to make a dent in this awareness, work; a lot of work, needs to get done.  I have had conversations all weekend long and people are doing some pretty cool things

Tomorrow (hopefully) I will supply some in-depth info about some initiative’s that I have been working on with some immediate action steps that can be done in your community as well as some legislative action-steps, and if the info helps you, great; if not I, certainly wish you well as you do what you feel can to make a difference.

Some information we know already that may be of some help as you move forward.  In North Carolina, where there is pending legislation waiting to go to their State Senate floor for a vote, the proposed law states the following:

A BILL TO BE ENTITLED REEGAN’s RULE
AN ACT ENCOURAGING PARENT EDUCATION DURING WELL-CHILD VISITS AT SPECIFIC AGE INTERVALS REGARDING TYPE 1 DIABETES
The General Assembly of North Carolina enacts:
SECTION 1. Chapter 130A of the General Statutes is amended by adding a new section to read:
130A-221.5. Diabetes education as part of well-child care.
Each physician, physician’s assistant, or certified nurse practitioner who provides well-child care is encouraged to educate and discuss the warning signs of Type 1 diabetes and symptoms are with each parent for each child under the care of physicians, physicians assistant, or certified nurse practitioner at least once at the following age intervals:
1. Birth
2. Twelve months of age
3. Twenty-four months of age
4. Thirty-six months
5. Forty-eight months
6. Sixty months. 
Section 2. This act becomes effective October 1, 2015

A few things: I share this with you because many have asked me about this law.  Reegan’s mom is the driving force behind this law and what she has accomplished is monumental.  the death of her daughter, by a missed diagnosis, has enrolled her into a club of which no one would ever ask to be in; but she has laid ‘it all out  there’ with determination, drive, and grace to make sure it NEVER happens again and she has started in her own state of North Carolina.

WHAT YOU NEED TO KNOW:  
Many have asked about the process of  how this law came into being.  It is important to understand that there have been many discussions/revisions during the process of this proposed bill.  From entering committee for discussion (if ANY BILL does NOT get out of Committee—it never reaches the floor for a vote) to being voted upon in legislature chambers.  There was consideration/dialogue about all sorts of mandatory testing, checking, and yes, even education.  But when it comes to stating something is mandatory (and in the instance of ‘checking/testing’ it means insurance companies/Medicaid would have to pay for it), the opposition to that type of legislation ‘came out of the woodwork’ (as they used to say).  You are certainly free to pursue this law but attempting to make anything mandatory and/or invasive is going to be met with STIFF resistance.
Passing legislation is also extremely labor intensive and takes a good deal of time.  I say that so you know, NOT TO discourage you—-new laws are also VERY POWERFUL.  Should we be successful in North Carolina, it will be the first bill of its kind.  It’s progress.

Should you be making an appointment with your state representative (any federal branch, US Congress/US Senate will  usually ‘kick you back’ to your state level—-FYI) I suggest you go in there with a menu of choices like Debbie Healy did in Pennsylvania.  If they think they can get a blood/urine test passed——-GO FOR IT.

Here is just a partial menu to consider:
1)         Parental Education – Physicians provide this education to parents since parents are the “first responders.” Example: Proposed NC Bill that encourages parent education during well-child visits at specific intervals regarding Type 1 Diabetes.

2)         Require physicians to give either a finger prick blood test or a urine test to every/any child who enters the office showing flu/virus like symptoms. This would allow the doctor to know if the child has an elevated glucose level.  Although it cannot be a diagnostic tool for T1D, it will surely show that more testing is needed.

3)         Educating school children about Type 1 Diabetes at the elementary, middle school, and high school levels. Should this be part of the core curriculum? This may already be in our curriculum. However, to what extent is this covered in school? In what grades is this taught?

4)         Require Physicians to learn about Type 1 Diabetes (and Diabetic Ketoacidosis) as part of their initial and continuing professional education utilizing it for education credits awarded as is required.

5)         Screen populations for children who may go on to develop Type 1 Diabetes by testing for the auto-antibodies of T1D.

Ask your legislature what they think could/might/will work?

Another GREAT idea came from Leigh Szczur in Oregon who is looking into existing laws in her state regarding diabetes to see if it makes sense to ‘piggy-back’ on a law already on the books.  GREAT food for thought.

These are all fabulous ideas.  We will speak more about these efforts this week.  Whatever initiatives you are working on, and if you want me to relay it, I will gladly give you the space here.  A couple of stipulations.  It has to be an initiative, that could garner solid/real results.  I just do not have the time to investigate every initiative, do not just send me a link, send me info as well.  A petition as a stand alone, in actuality, does little.  If you have started one, and there are many, let me know how it is going, how you are getting signatures, how others can help beside ‘just pass it along’, or is that all you need?  What will you do with the petition when completed, send me an outline and pertinent links and I will try to find the space for you.  If you feel strongly about petitions, and have started one; just let us know HOW it will get something done; and I will gladly give you the space.

Sites and FB pages:  Same rule as above, if you merely add a link to my site, it usually will get removed if permission has not been given, this is just fair for everyone.  Many spammers and crawlers (products etc) will add links, so it’s a general rule. I need the content to stay ‘editorially clean’ as I receive no advertising dollars.  Also, if you have a closed FB page, I probably will not share your initiative unless it is highlighted for a specific group; Dads, People who lost a child, moms….etc.  PLEASE DO NOT misunderstand me, it’s YOUR CALL how you run your page and it’s just easier (for me) if wide-ranged initiatives are open for all.  For example, someone suggested a closed page last week and I could not see what it was about…..if I ‘put it out there’, I should know a little about the site and so should people who visit it…….make sense?  Again, it’s totally your call if it is ‘invite only’ and I have no issue with that whatsoever, but I cannot just ‘put it out there’ if I cannot see what it is about.

So email me at tkarlya@drif.org with a write-up on what you are doing and if my site can help at all in sharing where others can learn, I’m happy to share the word.  There truly is no need to reinvent the wheel……many initiatives offer great and powerful tools. www.getdiabetesright.org is just one of them.  All sorts of professionally made posters that you can download and share in right in your community.  Don’t be overwhelmed by ‘initiatives’.  If someone sees a poster posted in a Docs office or at the public library and they are educated and catch T1 before DKA when it looks like a virus or flu—-THAT IS HUGE and should NEVER be understated.

Education is education…..in the amount of time it takes legislation to pass, tens of thousands of posters could be hung in communities all around the world.  Think about it…..no initiative with ACTUAL IMPACT is TOO small.  One small meeting with the National Association of School Nurses has already resulted in programs that  have caught T1 DKA, when it was thought to be just a flu or virus……..how COOL IS THAT?????   “A lotta little makes a lot!!!!!”

We are presently working on a PSA and on reaching out with initiatives for medical groups (Pediatric, family physicians, school nurse ets.); I know that standards of care can be set by Medicare, the chief health officer of each state, and the Surgeon General of the United States—-want an initiative?….pick one and go for it.

So let me know how I can help?  And let others know what can be done?  There are SO MANY roadways we can all take…..pick one.  Again specific data that might be helpful is forth coming.  Please stay engaged.  This MUST BE FOUGHT on so many levels—pick the one that works for you.  Just ‘Don’t Do Nothing’.

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

 

 

 

 

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