Taking care of type 1 diabetes isn’t cheap. New therapies are not covered by most insurance companies and if they are, deductibles are often high. Combine this with a bad economy plus the over 47 million uninsured in the US and you have the recipe for poor diabetes outcomes.

There is often a term used to describe what an insurer will pay for. It is couched in a vague term called “medically necessary”. Interpreting what this term mean is often left to professional groups, business types, and others who may sometimes be minimally knowledgeable about the disease in question. The groups whose opinion seems to matter the least are the actual patients or families who struggle with diabetes.

So, the Diabetes Challenge Question of the Day is simple enough: what diabetes treatments, devices, education, or care do you define as “medically necessary” and WHY? Be specific in your responses and give examples. This is really important to the future of diabetes care.

Opening ceremonies

We had an energetic opening ceremony last night. There was lots of song and dance, plus some solemn moments as well. The first coup feather was awarded as well.

Monday was very busy with oldest unit campouts and the evening activity being The Price is Right. It was a hot day, but it didn’t slow anyone down, especially at the pool. There were activities going on everywhere and lots of happy campers everywhere I went.

Why children need help with diabetes care

Once upon a time, promoting independence in self care in teens was the theme of diabetes education at camp. But a deeper appreciation for the need for emotional maturity in the face of growing complexity of diabetes has resulted in a shift in this philosophy over the past decade. But there is another reason that is often overlooked, and it pertains to the way most children and teens process complex information. Up until age 15, most children are considered “concrete thinkers”. By concrete, I mean they usually can’t consider the concept of a hypothesis (theory); they struggle to consider multiple possibilities in a challenging situation, often can’t systematically solve a multi-step problem, and can’t use combinatorial logic. Concrete thinkers often have knowledge of specific facts without understanding of their full meaning or significance. The mistake we as adults make is in believing that since a kid can tell us how many carbs are in an apple or banana, that they can effectively carb-count with their meals.

Communicating with a concrete thinker must be very specific and limited to very narrow set of options or parameters. This comes into direct conflict with diabetes care, which is in many ways abstract. Good self care requires a near constant attention to detail and a drive and motivation to succeed all the time. The majority of children and teens (plus many adults) struggle with maintaining the necessary focus to sustain good self care over time. In some ways, they might be set up to fail based on what we are asking them to do for themselves. So, when I hear parents look over to their son or daughter at camper check in and say “you ought to be doing this”, I see why so many of our campers struggle. Certainly, this is not an intentional act on the part of parents, but a lack of appreciation for the level of maturity required to really manage diabetes well.

I often show a photo of Tiger Woods, the premiere golfer of our time. I show him holding one of many championship trophies he’s won over the years. I next show Tiger’s golf bag and clubs. Next, I show a child with diabetes and an ‘in-range’ A1C (representing good control). I then insert a photo of an insulin pump or multi-dose insulin therapy and ask the provocative question: “Could you win the Master’s with Tiger’s golf clubs?” Of course the answer is “no”. So why then would you expect an insulin pump (or pretty much any other device for that matter) to all by itself result in an ideal outcome? It’s all about the person, not the technology.

The child or teen with diabetes requires a working family structure to do well. Without it, chances of success fall dramatically. So parents, listen up. If you want your camper to return from camp and take more responsibility with his or her diabetes self care, you must be at their side at every step along the way.

Texas Lions Camp

My medical team are very appreciative guests of the Texas Lions Camp. This camp had the vision to create this diabetes camping program almost 40 years ago. I’ve been lucky to be part of it each year since 1981. I encourage families to consider making donations to the camp. Every donation is appreciated and put to good use to serve the children of Texas with diabetes. The medical staff applauds Mr. Stephen Mabry, the camp’s CEO, for the quality team of individuals who operate every facet of the camp and effectively interface with my volunteer medical staff. The camp’s website is http://www.lionscamp.com. Photos of campers from this session can be purchased on the Lions Camp site.

Webinar

This week’s Parent’s Day Webinar is scheduled at 8-9 PM CST. There will be no “echo chamber” effect like last week. Updated links are posted to the webinar site. Attendees from last Wednesday night are invited to rejoin the webinar next week if you had to leave early. Also, the twitter site http://twitter.com/Dr_Steve_Ponder and this blog site form part of the alternative approach I’ve tried to develop to replace our 2 hour Parents Day program in the Rec Hall we used to have. I look forward to having the pleasure of visiting with parents over dinner on Friday evening July 31th starting at 5:15 PM. Last week, the dining hall was full (at least 350 in attendance). I hope for a similar crowd this week. If you have any questions or comments about camp, please let me know anytime at Stephen.Ponder@dchstx.org.

Diabetes Housecall

About 2 years ago I created a revolutionary new approach to diabetes care for children. It’s called Diabetes Housecall. I currently have patients with diabetes who have been seen as far away as Iowa. Texas patients as far away as 600 miles are seen just as easily as if they were in town. I encourage you to check out my website that explains how this innovative care program operates (http://www.diabeteshousecall.com) to allow me to see you in the comfort of your own home, also while having access to all your relevant diabetes self care information. The rules of participation in this exciting program are explained on the website.

I recently received good news that Blue Cross Blue Shield of Texas will be adding this program as a covered benefit to many of their members starting at the end of September 2009. This would be a first for home based telemedicine care for children with diabetes in Texas. Advantages of Housecall include 30 minutes or more of direct face to face time with the diabetes specialist. No waiting rooms, long car rides, time out of work or school, to see the diabetes doctor. Does this sound pretty good? If so, check it out at www.diabeteshousecall.com.

And for those of you who can’t get enough of Camp from the comfort of your own air conditioned home with Internet access… more pictures of kids doing what kids do best.

Today’s Diabetes Challenge question of the day is for all parents of children or teens with type 1 diabetes. The role of being a parent of a child with diabetes may range between one of constant supervision to a state of complete detachment. Most parents simply feel they’re only fulfilling the role of parent as best as they know how. However, many teens with diabetes feel that their parents behave like the “Diabetes Police”. So the question today is: Rate yourself on a scale of 1 to 10, with 1 being like a diabetes “mall cop” to 10 like being the Diabetes “KGB”. Explain why your level of involvement in your child’s diabetes care is just right, not enough or perhaps excessive. Give examples.

Reflections on the first day of camp.

The second session of Diabetes Camp is underway. I’ve reviewed the state of the more than 200 campers under our care this week. As with the previous session, I saw lots of pumps and multi-dose insulin schedules. Both are what are referred to as “basal-bolus” insulin schedules. The “basal” is the long-acting insulin (Levemir or Lantus) and the “bolus” is the rapid-acting insulin (e.g., Humalog, Novolog, Apidra) taken before meals, large snacks and for correcting high BG levels.

The other approach, “split-mixed insulin therapy”, is rapidly becoming a relic of the past. Classic split-mixed regimens involved taking “intermediate-acting” insulin (NPH or the now defunct Lente) in the morning and evening, plus mixing in fast-acting insulin at the same times (2 shots a day). The total dose was “split” and “mixed”. Newer versions of split-mixed include NPH at bedtime instead of supper, with the rapid insulin still given before the evening meal. I have used a variant of this schedule quite effectively by substituting Lantus or Levemir for the bedtime dose of NPH. It has the advantage of causing much less middle of the night low blood sugar while avoiding the need for an injection at lunchtime.

Less than 10% of campers use an insulin regimen with NPH insulin at our camps. Analog insulin has trumped the old NPH insulin (which had been around since the 1940’s). And that was not an accident. Not only are most long acting analog insulin preparations much more predictable in their action compared to NPH, but they have had the marketing power of major pharmaceutical companies knocking doctor’s doors down to encourage them to prescribe their new and improved insulin analogs. NPH is also less expensive than insulins like Lantus, Levemir, Novolog and Humalog. That’s good for us, but bad for the insulin companies. In the end, NPH’s fate never had much of a chance.

But has there been a rush to judgment? Are the stories of NPH’s demise overstated? Much of the world still uses NPH insulin and classic split-mixed insulin schedules. If for no other reason than cost. NPH insulin costs a fraction of what a bottle of Lantus or Levemir costs. Here at camp last week, we had children using NPH regimens that had A1c values better than many of the campers on more sophisticated basal-bolus schedules or even pumps. The reason for the success of these simpler insulin schemes is consistency. If a diabetic can maintain a regular activity schedule and carbohydrate intake, then these regimens can be quite effective. Compared to the proven potential for better control with a basal-bolus regimen, we seem to be falling well short of realizing A1c values in the sub 7% range in most kids with type 1 diabetes on basal-bolus.

This fact begs a huge question: have we reached a point of diminishing returns as far as our ability to deliver a high quality injected insulin regimen (i.e., basal-bolus)?

Even a pump infuses insulin in a largely non-physiologic way. Insulin injected under the skin must first pass a gauntlet of tissues intent on destroying its action, starting with the skin and ending with the liver. This is why the amount of insulin injected under the skin is usually 10 times the amount of insulin that would be produced inside the body to produce a similar level of glucose control.

As I examined camper insulin regimens on Sunday, I found example after example of poorly applied basic diabetes insulin management principles. Some basal-bolus schedules were essentially fixed dose regimens with seemingly arbitrary rules for dosing extra insulin. Some had no correction factor or insulin to carbohydrate ratio included and dosing was based solely on glucose level and not carbs to be eaten. These factors are integral to any kind of quality basal-bolus or insulin pump regimen.

The frequency of blood sugar monitoring also fails in many cases to be frequent enough to allow for proper self-dosing calculations. Worse, campers in many cases didn’t know how to apply the proper decision making skills that are so essential for basal-bolus to work as expected. This is where parents must step in during childhood for sure, but also well into adolescence (through age 16 at least).

Don’t get me wrong: basal-bolus schedules are based on solid principles. But in many cases they are applied by people lacking the necessary training, skills, experience and motivation to make them work. As a result, A1c values still remain entrenched in the high 8 and mid-9% range for people on these regimens. Is this the kind of return on investment you want for your child or teen? Would you argue that the alternative is worse?

I think that as we look down the road for the next great hope for diabetes, we often lose sight of the tools we already have now and how well they can still work for us. New is not necessarily best or even better than what we have now. Plus, as I’ve said over and over, diabetes care is a series of informed choices, created by ongoing diabetes education and polished by personal experience.

So think twice about whether or not to be the first on your block to get on the bandwagon for the next great thing in diabetes care (whatever it may be). Beware of snake oil diabetes miracle therapies. They’re everywhere.

Stay in virtual touch with diabetes camp

I am posting daily blogs here about important diabetes issues that directly relate to the camp and posing controversial questions to you as above. I’m also tweeting very frequently from camp. Check out my twitter site: http://twitter.com/Dr_Steve_Ponder . My tweets are real time observations from camp (plus twitpics) as they happen, sent immediately from my mobile phone. I’m discussing how things are going and any special problems or situations that all parents of children with diabetes would benefit from. I’ll also answer questions posted to this blog site as quickly as I can. You can also check out the camp’s website at http://www.lionscamp.com where you can check out daily photographs from the day before. As always, we will be preparing a complementary DVD photo album for all campers to be provided at check out on Friday evening.

Parent’s Webinar on Wednesday Evening

A Parents Day Webinar will be held at 8-9PM CST on Wednesday July 29th 2009. Go to the TLC webinar site now for the details on how to participate. It’s totally free and can be accessed from the comfort of your home PC, laptop or just call in using your telephone. Even if you don’t have a webcam, you can dial in to the conference bridge. I’ll be discussing camper progress at camp to date, key observations about how campers are stacking up compared to each other, and address some major hot button issues in type 1 diabetes care of children in 2009. There are several hot topics I’ll be addressing. Join in and listen, or submit questions on line in the Q&A section of the Live Meeting toolbar during the webinar. See you in cyberspace! Also feel free to suggest topics via comments to the blog posts below. (New comments are approved so if this is your first time it may take an hour or two before you see your comment online).

Diabetes care has never been more overrun by new therapies and technology than today. What’s certain is that this trend will continue. I’ve lived with diabetes through many different “revolutions” in its management, starting with disposable syringes, smaller sharper needles, U-100 insulin, clinitest tablets, ketostix strips, self blood glucose monitoring, insulin pump therapy, human insulin, analog insulin, glucose sensors and everything else in-between. Many of you may not understand the initial references I just made while others may be able to add many more. Having a historical perspective on type 1 diabetes helps many of us understand how far we have come but also how much of a business that diabetes care has become. We drive an economic engine within the health care industry that is only getting larger as our ranks continue to swell.

My posts this week will be different than last week, even though we have a new group of campers. I refer any parents who want get more on my thoughts of childhood diabetes and camp to previous blog posts archived on this site which are also tagged under the category “TLC 2009″.

Quality diabetes self care is a process, not a device or new drug. This is because of the myriad of choices that go into managing constant shifts in blood sugar that occur to every mammal on this planet. In the case of young people, their team MUST include the family. To do less only harms the child or teen. Ironically, we seem to always be looking for ways to transfer many of the key day to day self care skills at younger and younger ages. As Barbara Anderson is well known to say, children and teens almost always lack the emotional muscle to match the physical muscle they use (or should use) to perform frequent daily self care tasks.

The next week will provide yet another window into how diabetes is (and isn’t) managed well in children from across the state of Texas. This camp has been the single greatest teacher in my lifelong study of diabetes in children. I return here each year to learn as well as to serve.

Today’s Diabetes Challenge question of the day asks “who is on your diabetes team?”. Are you a “Lone Ranger” or backed by the Verizon wireless guy and the “power of the network”? While we often applaud the “go it alone” approach and individual initiative in others, diabetes care is best approached as a team sport. The question is who is on your team? Who are the key players that play a pivotal role in how you live day to day with your diabetes or in the life of your child’s diabetes? Furthermore, how much of your success do you attribute to yourself and how much can you directly attribute to others on your team? How many of you wish you had a larger team? A smaller team? A more relaxed team? A more involved team? Perhaps you think that diabetes self care is just that: SELF CARE; and no one else needs to be involved. Be honest and be specific.

Stay in virtual touch with diabetes camp

I am posting daily blogs here about important diabetes issues that directly relate to the camp and posing controversial questions to you as above. I’m also tweeting very frequently from camp. Check out my twitter site: http://twitter.com/Dr_Steve_Ponder . My tweets are real time observations from camp (plus twitpics) as they happen, sent immediately from my mobile phone. I’m discussing how things are going and any special problems or situations that all parents of children with diabetes would benefit from. I’ll also answer questions posted to this blog site as quickly as I can. You can also check out the camp’s website at http://www.lionscamp.com where you can check out daily photographs from the day before. As always, we will be preparing a complementary DVD photo album for all campers to be provided at check out on Friday evening.

Parent’s Webinar on Wednesday Evening

A Parents Day Webinar will be held at 8-9PM CST on Wednesday July 29th 2009. Go to the TLC webinar site now for the details on how to participate. It’s totally free and can be accessed from the comfort of your home PC, laptop or just call in using your telephone. Even if you don’t have a webcam, you can dial in to the conference bridge. I’ll be discussing camper progress at camp to date, key observations about how campers are stacking up compared to each other, and address some major hot button issues in type 1 diabetes care of children in 2009. There are several hot topics I’ll be addressing. Join in and listen, or submit questions on line in the Q&A section of the Live Meeting toolbar during the webinar. See you in cyberspace! Also feel free to suggest topics via comments to the blog posts below. (New comments are approved so if this is your first time it may take an hour or two before you see your comment online).