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I attended the 2009 ADA Scientific Sessions in New Orleans. I was both discouraged and encouraged by what I heard about the state of diabetes prevention. Many different treatments have shown great promise in slowing down the rate of beta cell loss (where insulin comes from), but none have been “home runs” so far in people. The general theme that I walked away with was that researchers are focusing more on combining treatment protocols to see if the sum will be greater than the individual parts. But to be able to test these treatments, more diabetes prone individuals need to be identified.

At camp, many of you met with representatives of the Diabetes TrialNet study. These folks collected a small amount of blood to analyze for antibodies to the insulin producing cells in the pancreas. Each year they find a few positive results in otherwise asymptomatic adults and children. It is important to note that there is a peak of type 1 diabetes being seen in toddlers and small children. But there is another “bump” for persons in the 35-45 year age range. Yes, mom and dad are still at risk for developing type 1 diabetes. So consider getting the rest of the family screened. With TrialNet, screening costs are free. If you happen to be antibody positive, you may be eligible for some exciting new treatments that will attempt to prevent further progression of loss of your insulin producing tissues.

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?

If you’re a parent or spouse of a person with type 1 diabetes, are you a member of the “3 AM Club”? I’m not talking about a late night out on the town with your friends, but the “witching hour” when low blood sugars are more likely to happen. Scary movies often portray 3AM as a time when mysterious or supernatural things occur to people. In diabetics taking insulin, 3 AM can become a “perfect storm” of sorts where the sugar lowering effect of the insulin, excessive physical activity or less food intake collide at a time when a blood sugar “low tide” naturally occurs.

Being a 3 AM clubber means you’re someone who sets your alarm clock during the middle of the night to check your child or loved one for a surprise low blood sugar. Your membership ritual occurred on that night your child or spouse had that severe low blood sugar during sleep, maybe even a seizure. After ceremoniously witnessing a severe low sugar or even calling 911 for help, you take the vow to not let this happen again, even at the cost of your own physical and mental well being.

3 AM clubbers are everywhere. In my practice I try to find them and offer a way out. Most are not hard to find: just look for the bags under the eyes and the burned out looks on their faces. That’s what years of 3 AM club membership will do for you. One family I know of had her aunt sleep on the floor every night in her niece’s bedroom for 10 years after a low blood sugar when the girl was a toddler.

But first they must be willing to leave and that takes some effort to change. Being the nighttime BG checker is a noble and selfless act, but it takes a dangerous toll on this family member, beginning with sleep deprivation, chronic stress and anxiety, and even eventually problems with marital relations. Many feel it’s a duty and to do anything less would be wrong. They often see no way out. Now in most cases I’m talking about moms, but dads are often found wandering around in this club too.

But unlike the “Hotel California”, you can check out AND leave the 3 AM club. The first step is to carefully review the insulin doses taken in the evening. They might just be too much. Different insulin types peak (work strongest) in relation to the time when they’re injected. If that peak happens during the middle of the night (like with NPH insulin taken at suppertime, or 75/25 or 70/30 premixes), talk to your doctor about changing the time the shot is taken. Since most children and teens today are on basal bolus insulin regimens, the peaking effect of the basal insulin preparations (glargine and detemir) is less pronounced and can be managed by prudent adjustments in most cases.

Adjust the bedtime snack to provide a source of long-acting carbohydrates into the body to allow a steady source of sugar for getting a good night’s sleep. Excessive physical activity the day before can cause post-exercise hypoglycemia and can be offset by increases in the bedtime snack carbohydrates on that night only. In general, proper meal and snack planning can be as helpful as insulin adjustments for reducing the chances of middle of the night low blood sugars.

High tech exits from the 3 AM club include the insulin pump and/or the continuous glucose sensor. Rates of insulin delivery may be lowered at night to avoid aggravating the natural tendency for middle of the night low sugars. Remember to time the rate change to happen about 2 hours before the time you really need less insulin action.

Continuous glucose monitoring sensors now measure blood sugar levels minute to minute and have alarms that go off at night when sugars start to get too low or too high. Add a baby monitor to your toolkit and you’ve got a high tech solution for remote monitoring. These new CGMs require a level of commitment by the family and patient to wear them consistently, which is not insignificant (for help with reimbursement you might try CGMSCentral). Also, these units are pricey and require a doctor’s prescription, but they can get be an express ticket out of the 3 AM club for many.

So just how much BG checking is too much? That’s debatable. Those of you with CGM devices may glance at them every hour or more. But monitoring hourly blood samples is excessive for all but the most obsessive compulsive folks and not a practice compatible with good mental well being. It’s all about what you do with the data you get. Going to the 3AM Club now and then is fine and a very good idea especially for those days outside of normal or even as a planned test for a few days. But when you find yourself trapped in the 3 AM club, start looking for the exits.