Link to the story to see a video of a day in Daisy's and her family's lives

Unless We Make Some Changes…

Read this story from the BBC for yourself. We’ve seen this dramatic increase in type 1 already starting about a year ago in the diabetes centers that we work with in the USA. Basically, the new cases of kids with type 1 diabetes have doubled!

Historically, the statistics on type 1 in kids is roughly 1 in 400 or 1 in 600 depending on the source. So let’s say 1 in 500. With doubling, that number will soon begin to approach 1 in 250 over time. In the USA, there are approximately 200,000 school age kids with type 1. Another source I read in the past states that there are approximately 30,000 new cases of type 1 each year in the USA and that approximately half of those are school aged kids. Based on this story and recent discussion, it’s safe to say that there are 30,000 new onset cases of type 1 in school aged kids. It used to be that a typical age for new onset (the mode) was around 8 to 11 years. Based on discussions with endocrinologists and educators along with the information in the story, the age of new onset is clearly moving to younger and younger kids. That means more diabetes supplies over more years and more risk of trips to the Emergency Department not to mention more time at risk for complications like cardiovascular disease in the teen years.

My experience has shown me that each endocrinologist working with diabetic patients handles approximately 200 to 400 patients. There are only 200 pediatric endocrinologists in the US and very few docs coming out of med school are attracted to the relatively low pay (vs other specialist alternatives), unbilled hours for telephone consults and logbook review, and lack of control (behavior change is the required skillset vs. diagnosing to prescribe pills/dose change to fix the condition).

While there are something like 14,000 diabetes educators in the US, most of them are trained and experienced on how to work with adults with type 2 diabetes - a very different scenario than working with a kid with type 1 who may also come from a broken home or other family issues.

If each patient requires 6 hours per year (30 minutes per office visit 4 times per year plus 20 minutes per month on average for another hour over the course of a year) and there are 700 trained providers, then there are a total of 1,380,000 hours of skilled care required at a minimum since this assumes no complications. If each provider is available for 30 hours per week of patient facing time, then the current skilled pediatric labor pool is able to provide 1,050,000 hours of patient directed care. Not enough providers to deliver standard care especially when you factor in the doubling effect of new onset. The numbers I use here are only rough assumptions to illustrate the gap in the current health care delivery model for type 1 diabetes. At some point there is a scary reality and a breaking point that nobody is aware of.

Sadly, until the economics are changed to incent providers to work with type 1 kids, I don’t believe we’ll get sufficient trained people to help us with this avalanche of new patients. That leaves us with having to develop new models of care that increase the efficiency, effectiveness and reach of the trained providers we already have as well as making patients better at self-care in the absence of their diabetes coaches. A little technology will go a long way if done right and adopted (embraced) by providers. I’m reminded of a slogan we adopted a year or two ago which is now posted at the top of Diabetech’s home page on the Web, “We’re dragging Diabetes Technology ‘kicking and screaming’ into the 21st Century”. With recent successes made on the payer front, we’re soon going to need to swap out the word ‘Technology’ for ‘Providers’.

My reason for making this post is to raise the awareness that the perfect storm is upon us. Who is doing the study to prove that we need to make changes now - based on irrefutable proof that maintaining the status quo is like using a syringe to bail out a sinking ship?

The following is my best attempt at transcribing from memory a conversation I had earlier today with my 9yr old daughter; my inspiration for improving the tools needed by patients, caregivers and their medical teams for keeping her healthy while we race for a cure to type 1 diabetes:

Dad: “Have you ever heard of Microsoft?”

Daughter: “Sure. They built our computer.”

Dad: “Do you know who Google is?”

Daughter: “Yeah. They invented the Internet.”

Dad: “Both Microsoft and Google are working to accelerate research towards a cure for diabetes.”

Daughter: “That’s awesome, Dad.”

Dad: “Instead of using what Microsoft and Google already put together, ‘ABCD’ decided to pay a small company to build the same thing. What do think about that?”

Daughter: “Why don’t they just work with Microsoft and Google? Oh, they probably know the people that work for that company. That money should be used to help find the cure, Dad.”

It’s a sad day when your 9 yr old daughter knows when things aren’t right and yet the people you are counting on to make every dollar count for accelerating a cure to your daughter’s disease don’t see it. Even if there is a good reason to bypass existing and more powerful alternatives, those decisions aren’t being made in the open and the people donating the money don’t have the slightest access as to why.

How about transparency in the world of non-profits or do we just not expect the same level of fiduciary responsibility that Obama is asking for from his administration?

Given the state of free and existing communities like Ning (as well as Facebook, MySpace, etc…) and patient registries like TrialX (a description of their patient registry and trial matching service with Microsoft & Google) there had better be a damn good reason why people we entrust with our money (non-profits and the government) spend our money developing web-based services from scratch vs. taking advantage of commercially available and highly cost effective alternatives.

One of my favorite movies growing up (and even as an adult) was The Wizard of Oz. I learned many lessons about life from its symbolism. Without question, the most profound message I learned was that inner peace and happiness are never found “over the rainbow”, but in our own back yards (faith, family, and personal relationships). It was only at the end of her journey through Oz that Dorothy realized she always had the power within her to return home (to family and happiness). The magic of the ruby slippers in truth resided within her. But first she had to believe; not in the slippers, but in herself.

That message has resonated with me over the years regarding many other aspects of life. I see a very strong connection between this human truth and how we manage diabetes (and that of our children).

Let’s face it. Many diabetics are always looking for an “over the rainbow” solution to our blood sugar control problems; a “knight in shining armor” to come rescue us from the diabetes “dragon”. Our ruby slippers may be the latest blood sugar meter, some new diabetes care tool, a state of the art insulin pump, a new pill, or a new investigational therapy that might just “cure” our diabetes altogether.

But disappointment, rather than satisfaction, is what we often seem to find. Over my nearly half century of living with diabetes, I’ve seen countless new diabetes tools and gadgets marketed on hope and anticipation. Virtually none of these tools have removed the need for me (or my family) to take an active and responsible role in daily diabetes self care.

The hope that a diabetes “cure” is just around the corner has been dangled in front of me or my parents for over 43 years. Plus, it’s always just about “5 years away”. Don’t get me wrong. I still believe a cure will come. Maybe not in my lifetime, but I’m as hopeful as the next person. However, I’m also a realist. We make our own destiny as far as diabetes is concerned. It’s all about our choices.

But is the problem with our technology or with us? At some point we (hopefully) realize that our diabetes fate is in our hands. Oprah Winfrey has aptly coined a term for this sort of epiphany: the “ahah” moment. The point of true clarity where you see what your life challenges really are. And they’re not necessarily what you’ve been thinking about all along.

Diabetes control is not a thing, but a state of mind…a way of living. You can’t save up a “bucket” of good diabetes control to live off of during hard times. In the end, good diabetes control is the sum of your choices made each day. It starts from when you woke up this morning and exists until the minute you fall asleep. Actions you take or don’t take matter equally by my argument. First among those critical choices is finding a doctor to care for your diabetes. Next is embracing the concept of diabetes self management education. Diabetes is a condition you live with. It’s the tiger in the room you must tame; otherwise you will be consumed by it.

How each person chooses to manage their diabetes (or not) is unique. The barriers to good care are often those we place before ourselves. The greatest contributor to why we often fail is ignorance, followed by fear, and then denial. Sadly, these traits can be passed down from generation to generation. Self care behaviors (both good and bad) can perpetuate themselves within a family setting; at least until someone stands up and challenges the “status quo”. I’ve found that the traits and qualities a person uses to solve the other challenges in life often get applied to how they approach their diabetes self care.

Like Dorothy, those who succeed and conquer their diabetes are the ones who realize and accept that they have been wearing the “ruby slippers” all along. They reject diabetes as a “fate” or “destiny” and refuse to submit to it. They use the God-given powers of choice to learn more about their diabetes and continue learning. They also understand that in the end diabetes is a marathon and not a sprint. The changes they make in their lives must be long lasting, not just temporary fixes. It’s the power of choice that separates us from all other life forms in this world. We all too often abdicate that very precious power when we are confronted with a challenge like diabetes.

So next time you look in the mirror, realize that it’s you who is in charge of your diabetes. Only when this “ahah” moment occurs will you have turned a corner in your “life lived well” with diabetes.

To read yet another version of the diabetes - Dorothy analogy go here.