After Pennsylvania became the second state in the Union yesterday to have some sort of Legislation or Resolution passed regarding education of DKA and the missed diagnosis of T1D, many people wanted to know “How do I do this in my State?”
There is no ‘one way’ but I put together a little bit on what we have learned thus far.
Consider this an “A” how-to article; certainly not “THE” how-to article to get you started. The reading below is long but it’s a map that can be used to get you started.
You have decided that the rules in your state need to be changed regarding ‘missed diagnosed’ T1 diabetes. You want to change the paradigm of children entering diabetes ketoacidosis (DKA) and you want your state legislator to be involved. Great.
Now what?
The only way ANYONE became GOOD AT THIS is by doing it……know that as you start. Do not be afraid to make errors. Relax. You know this disease, you live with it every day. Below are JUST SOME IDEAS. Add, remove, use what helps and don’t use anything with which you are uncomfortable.
Keep the message straightforward and stay on message/point: Too many kids are being diagnosed in this country with T1 diabetes by going into DKA because flu/virus symptoms are masking the onset of T1 Diabetes DKA. It results in hardship, hospital stays, and even death. A few steps could help prevent it from EVER happening. Stats are not even kept on this phenomena, but we surely know it exists.
The next thing to do is be prepared. Assume that your representative knows nothing. Do your homework and see if you can find some statistics from your state about diabetes. If not, there are plenty of sites that can supply information for you locally, nationally, and globally. Some links:
https://www.cdc.gov/diabetes/basics/quick-facts.html– National
http://apps.who.int/iris/bitstream/handle/10665/204871/9789241565257_eng.pdf;jsessionid=3FF45324056745D94FC9B19DA4009C36?sequence=1 – Global
You will try to arrange a meeting with your representative; when s/he is in the local office is best. If they cannot meet personally with you, but one of their representatives will; take that meeting. Get to know SOMEONE in that office. Arrange a sit-down; and discuss YOUR story.
Even if you have not experienced DKA at diagnosis but you have a loved one with T1D; that’s fine. You are speaking of the rise in T1 in this country and why we need to do something about it. After your story, discuss facts about diabetes–share information. From Medicine.net type 1 diabetes: An autoimmune disease that occurs when T cells attack and destroy most of the beta cells in the pancreas that are needed to produce insulin, so that the pancreas makes too little insulin (or no insulin). Without the capacity to make adequate amounts of insulin, the body is not able to metabolize blood glucose (sugar), to use it efficiently for energy, and toxic acids (called ketoacidosis) build up in the body. There is a genetic predisposition to type 1 diabetes.
The disease tends to occur in childhood, adolescence or early adulthood (before age 30) but it may have its clinical onset at any age. The symptoms and signs of type 1 diabetes characteristically appear abruptly, although the damage to the beta cells may begin much earlier and progress slowly and silently.
The symptoms and signs include a great thirst, hunger, a need to urinate often, and loss of weight. Among the risks of the disease are serious complications, among them blindness, kidney failure, extensive nerve damage, and accelerated atherosclerosis. The long-term aim with treatment is to avoid these complications or, at the least, to slow their progression. There is no known cure.
From Mayoclinic.org Diabetic ketoacidosis is a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. Diabetic ketoacidosis develops when your body is unable to produce enough insulin. Insulin normally plays a key role in helping sugar (glucose) — a major source of energy for your muscles and other tissues — enter your cells. Without enough insulin, your body begins to break down fat as an alternate fuel. This process produces a buildup of toxic acids in the bloodstream called ketones, eventually leading to diabetic ketoacidosis if untreated.
Explain the difference between T1 and T2. Share other pertinent facts/information. Now ask how s/he may help:
Here is just a partial menu to consider, go over it with your Representative: 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.
6) Seek laws already in existence where new laws may be ‘piggy-backed’.
Ask your legislature what they think could/might/will work? Enter the dialogue and leave with, “What happens next and when should I check back with you?”
You are on your way.
This is the wording that passed the house in NC; it stands ready to be presented to the NC Senate. 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, physician’s 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 – See more at: https://diabetesdad.org/#sthash.GCSHKyh8.dpuf (We are well aware that his is a very ‘soft law’ but it is a start. When this bill passes, we can encourage the State’s Health Commissioner to follow-up with educational material to the medical professionals in the State of North Carolina. Hopefully son we can say, one down and forty-nine to go. Pediatrics; The Official Journal of the American Academy of Pediatrics wrote in the conclusion of their study on the subject matter of DKA in Youth upon Dx:
CONCLUSION: The frequency of DKA in youth with type 1 diabetes, although stable, remains high, indicating a persistent need for increased awareness of signs and symptoms of diabetes and better access to health care……… Cite: 1. Published online March 31, 2014 Pediatrics Vol. 133 No. 4 April 1, 2014 pp. e938 -e945 (doi: 10.1542/peds.2013-2795)
A recent study to explore the pathway to diagnosis of type 1 diabetes (T1D) in children from the perspective of the child, family, and general practitioner (GP) concluded in their study, “… that the difficulties for parents and GPs in recognizing the early symptoms of T1D suggests that future interventions should be targeted at parents in the appraisal interval and include the importance of timely presentation to a healthcare professional and the differences between type1 and 2 diabetes.
PRIMARY CARE PHYSICIANS SHOULD ALSO TAKE PARENTAL CONCERNS SERIOUSLY AND DO URINE DIPSTICK TESTS DURING THE CONSULTATION FOR CHILDREN WITH SYMPTOMS OF T1D.” Cite: (Full study can be found: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3855567/pdf/bmjopen-2013-004068.pdf ) SCIENCE DAILY: (in context) Type 1 diabetes….is estimated to affect around half a million children worldwide, increasing in incidence by an estimated 3% every year. Cite: Society of Endocrinology, Science Daily March 19, 2013 40,000 people are diagnosed each year in the United States Cite: CDC National Statistic Report, 2014
5 Million people in the United States are expected to have T1 Diabetes by 2015, including nearly 600,000 youth.
Cite: JAMA –2014–311: p. 1778-1786
Between 2001-2009 there was a 21% increase in the prevalence of T1 diabetes in people under the age of 20
Cite: JAMA –2014–311: p. 1778-1786
3 million Americans have T1 Diabetes Cite: JDRF.org
Okay: You do not want to go the legislation route, that’s fine. How about letter writing campaigns to the hierarchy at these organizations painting the picture that something needs to be done. And enlisting their help to make a difference. The American Association of Family Physicians: http://www.aafp.org/home.html
The American Academy of Pediatrics: www.aap.org
The Society of Pediatric Nurses: www.pedsnurses.org
All of these organizations have state level ‘chapters’ as well.
Do not be afraid to ask the major diabetes organizations that have advocacy departments to help.
Start a campaign today.
I hope this gives you a start. I surely do not know all the answers and feel free to go in a completely different direction if you wish but ask yourself constantly: Will this accomplish something tangible. Follow your heart. Follow your brain.
Saving one person is monumental. My goal and thought process when I started was; “if we can just see one person’s flu/virus-like symptoms and intervene and see if it is T1–and it is—–I would deem the entire effort worth it. Just a year into it we know of six children. That does no help to little Reegan or Kycie; who lost their battle—-but in their names (and others) we can change this and we will change this because we choose to just ‘Not do Nothing.”
God bless you on this journey. And thanks for caring.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
Everyone of these young ladies, dancing their hearts out, have type 1 diabetes. Dancing for Diabetes has that kind of magic that made this entire evening one of the most memorable of all my World Diabetes Days in all my 22 years on this journey……understanding the nature of it, it was a hugely memorable evening all around. The unsung heroes are both the behind- the-scenes people who orchestrated the night; and all those who arranged the choreography–brilliantly executed and thoroughly entertaining all.
Fifteen years ago a young tween-ager (at the time), but no less determined, began Dancing for Diabetes in her driveway in her Florida home. It was the brainchild of a talented dancer, Elizabeth Stein, who was diagnosed shortly before with T1D.
But it is the softness, in this same woman’s eyes, when she speaks of the young dancers who are featured in the second act, all having diabetes. ‘I remember what it was like to dance and manage this disease. I know what they are going through.” And she does. When she is on one knee speaking to one of her dancers, she walks them through as they manage their diabetes. An outsider (me), cannot help but ask which is bigger, her knowledge of making Dancing for Diabetes the sharpest, tightest, and most professional evening of dance ever created; or her heart that cares so much for her dancers (and there were hundreds of them) especial those who dance with insulin pumps and CGMs on their waists and attached to their arms.
It was a World Diabetes Day to remember and for Elizabeth, by evening’s end, it would be even more-so as her boy friend dropped to one knee and asked her to marry him. She said yes.
