Normalcy First - Technology Second
July 2nd, 2007 by SteveI saw a family in the office the other day that was using the continuous glucose monitor for their young boy on the insulin pump. They first said they wanted to have the “latest and greatest” diabetes technology available. As the visit progressed, it turned out that the mother sleeps in the boy’s room every night out of fear of extremes in his blood sugar. Interestingly, her main concern seemed more focused on high readings than lows. That was a bit paradoxical to me. They also told me that the alarm on the glucose sensing device was set in such a way that it almost went off every couple of hours.
I was able to negotiate a different alarm threshold with them so they could at least get a little more sleep. There were also two slightly older sisters in the office and it was quite clear to me they felt like second-class citizens in this family and even said so when I brought the issue up for discussion. The brother with diabetes was the entire focus of the family. This is a problem situation to be sure.
Lastly, his dad didn’t look all that happy either. Mom went on to tell me that they check his blood sugar 8-10 times daily. This is in spite of the fact that the sensor only requires two calibration checks each day. After hearing this story, I asked how all this new diabetes technology had improved the quality of their lives. They said that it really hadn’t and that there was tremendous stress on the family. You think?
This story reveals a significant consequence of the technological world that has overtaken diabetes the past few years. When does technology become a burden instead of a support?
I left the visit feeling very bad for this family. They clearly wanted the best for their child, but in striving for the “latest and greatest” they actually leveraged the entire fabric of the family, which was very close to unraveling based on my observation. Their lives revolve around their son’s diabetes. Is there is a moral here?
I feel that the moral of this story is that diabetes care still needs to be considered a lifelong condition that is best supported by the entire family, not just one parent. Furthermore, a normal (or near-normal) life should be the real goal for any family with a child with diabetes (the same for an adult).
How “normal” would you consider this family? Not very. Diabetes technology, as great as it may seem and as alluring as it may be, is still in its infancy. Ultimately, it should improve the quality of life, not complicate it unnecessarily. I’m interested to hear from more pwd that use technology to manage diabetes and if it contributes to normalcy or detracts and how.
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July 2nd, 2007 at 8:00 am
I would say the same conclusion can be reached for virtually every type 1 diabetes treatment “advance” that has occurred since the discovery of insulin in 1922. The DCCT was supposed to have ushered in huge improvements in the quality of life, but the reality is that in exchange for a reduction (not an elimination) of some diabetes complications, patients were burdened with unprecedented day-to-day management burdens, and a statistically significant increase in hypoglycemic events, as well as large burdens in terms of cost of managing their condition — but I’m not sure that could be called a dramatic improvement in the patients’ quality of life.
Part of the reason for this is because there has been fundamentally nothing new in terms of treatment strategies since the widespread adoption of carbohydrate counting in during the 1980’s. Some like to cite insulin pumps, which certainly did enable refinements to dosages in increments that were never possible previously as a big advancement, and for patients with huge variability in basal insulin needs, this can deliver large improvements, but for patients without much variability in their basal insulin needs, the benefits of pumping are marginal. The pharmaceutical industry has been largely fixated on treatments for the massive type 2 market, while there have been only marginal improvements (for example, insulin analogs, which better matched glycemic peaks and valleys, yet did not eliminate insulin’s biggest drawback, namely hypoglycemia. There are companies working on this weakness (I’m thinking of SmartCells, Inc., for example), but there’s really nothing coming from big pharma, who has all but written the type 1 market off as little more than a niche market in their relentless pursuit of blockbusters rather than profitable niches.
July 2nd, 2007 at 3:27 pm
The CGM has helped me quite a bit in terms of getting over fears of lows, so it’s helped in that regard. In reality, the technology is only providing additional information, it’s only a burden if you let it be.
I think the problem at a very simplistic level is that there’s very little ‘just do the best you can do’ education. Diabetes education is so focused on convincing people that the only barrier to health & longevity is their willpower while conveniently glossing over the destructive nature of the disease. I know it’s basically a joke but look at all the glucometer adverts - I’ve never seen one where the test was anything but ‘104′ or ‘108′ or something like that. Just seeing 1 commercial with someone panicking over a low 40s or high 300s would literally make me feel better.
If their/my endos had basically leveled with them & said, look this is a crappy hand you’ve been dealt, you’ve got to learn to manage this as best you can without losing your minds, then I think things would have worked out better. Hopefully you or someone else can straighten them out but it sounds like they will need major amounts of counseling immediately and for a long time to come.
July 3rd, 2007 at 9:38 am
I like what Rob said about the glucometer advertising. It annoys me for glucose meter companies to cover their eyes (in advertising, at least) to the idea that someone might actually have a low or high glucose result while using their meter.
Do their advertising consultants actually believe that when people use their meter if they see a “normal” result?
The first company who shows a person with a high or low blood glucose and acts “surprised” or “saved” by it will truly be making big sales.
I’m tired of the advertising theme where they make the meter look like it makes the person’s life “easy” just because they need a small sample or don’t have to spend the “countless time” of coding their meter. (What a joke–who has spent more than 30 seconds every 2 weeks recoding their meter?!).
July 9th, 2007 at 1:12 am
I normally do not comment on blogs but I couldn’t walk away from this post without “saying” something. I am not nearly as eloquent as you so please bear with me.
My 10 (almost 11) year old daughter was diagnosed with Type 1 October 13, 2006 so we are still very new to this disease and have a lot to learn but as for the CGMS it has been a LIFESAVER for both our child’s sanity and our own. As parents we want the very best treatment along with as normal of a life as possible. We found that allowing our daughter to have the same “life” she had pre-dx was nearly impossible. People do not want to learn how to take care of thier kid’s friend’s diabetes, it is scary and complicated. With the CGMS we have been able to allow our daughter to stay the night with close family friends knowing if she goes low at night or even during play it will get caught. It is complicated technology and has a learning curve but once you figure out how to use the system it is soooo wonderful. I no longer spend most of my waking hours wondering if she is dropping or rising, I just look at the pump and know where we stand. My daughter has had several unexplained drops at times we would normally not test that were caught before they become severe. She was also able to participate in Softball this summer without constantly having to poke her finger (any excersize makes her extremely unstable, sometimes dropping hard and sometimes rising without rhyme or reason). As for the mother sleeping in the child’s room I do find it odd that she is more worried about highs than lows but I am hoping in the near future the CGMS companies will be able to fix the alarm issues so that those of us using this technology can finally get rid of our baby monitors and alarm clocks.
I guess I just felt the need to say that this technology is 1st generation and when you figure out the learning curve it is the best advancement since glucose meters in my opinion. From what I have read Dr’s were leary of home glucose testing when the meters began to market for home use. Our endo was leary of the system but now that they have seen the results through my daughter they are completly on board with the CGMS. I would not do without the CGMS now that we have it! It has improved my daughters quality of life dramatically and lowered my stress level tremendously.
July 10th, 2007 at 8:33 am
I appreciate Nicole’s comments. I’m very glad CGMS has returned elements of your daughter’s pre-diabetes life back to her. As I say all the time, tools have no moral compass. That is the role of the user. A diabetes tool can both help many and at the same time entrap or encumber others. It also points out a key element of diabetes care I’ve discussed on countless occasions: that diabetes care is 90% psychological/behavioral and 10% medical. Best of luck to you and your family!
July 10th, 2007 at 8:41 am
To address several of the above comments, let me say that I don’t know too many persons with diabetes for over 20 years that aren’t a bit cynical. I know there has been a long standing belief by some that our disease is a great market for others to get rich on. Why cure a multi-billion dollar industry? These arguments have been made many times before. Nevertheless, these attitudes do creep into my thinking when talking about meter and pump company business and advertising practices. I agree with the comment about always seeing low 100’s on BG meters advertised on TV or print ads. Perhaps some of these should step out and print an ad with a 40 or a 345 or the screen…with a check ketones alert just for good measure. I, for one, would appreciate the honesty as well. However, the lawyers for these companies, and perhaps the marketing folks, would argue that such “honesty” would lead people to believe (somehow) that the meter causes these problems to occur!
July 10th, 2007 at 8:48 am
Much of what we talk about here regarding the limits of our ability to manage diabetes to some “standard” (I guess, an A1C, but should that be all?, is there an A1C for your quality of life?”) illustrates the fact that diabetes is largely a patient managed disease. This is what throws most doctors, and frustrates some to no end. I tell my patients that I don’t manage anyone’s diabetes but my own. We educate, support and guide patients and families to improve their self care of diabetes, much like a coach and a player. The coach can’t play the game, but behind most successful teams are good coaches, wouldn’t you agree?
July 10th, 2007 at 9:07 am
We are another EXTREMELY happy CGMS family. Our 7 year old son has been on the Dexcom since October 2006 and it has improved our lives twofold. The first two months were definitely stressful, learning the ins and outs of the new technology, but having continuous data with direction and rate of change makes all the difference when making therapeutic decisions.
We will never willingly go “blind” again with finger pokes alone. We have prevented countless lows and reduced post-meal spikes greatly with better timed pre-bolusing.
Our system was also covered, without question, by United Healthcare. So the financial burden is about $20 per month.
I just wanted to share a different perspective on the value of this new technology.
Thanks!
July 10th, 2007 at 9:31 am
Hey Becky,
Sounds like your family was on the typical t1 roller coaster much like my family and thousands of others. Also, you were seeking normalcy for your family (not just your son) and you suspected that cgms would help you to achieve that goal… and it appears that it has. I think what Steve was describing in the original post was a family who bet the farm on new technology (cgms) as the panacea with acquiring the technology as the goal instead of treating cgms as a tool to achieve the goal of normalcy.
This might sound like a fine distinction but as you know by experience, cgms is just a means to an end as opposed to an end in itself. The parallel can be drawn with insulin pump therapy, too. Pump therapy will always improve control…in robots. However, not every patient is a good pump candidate for various reasons and that determination is ultimately made by the patient and caregivers (and sometimes insurance carriers). Likewise, approaching the pump as the goal won’t be nearly as beneficial to the patient/caregivers as viewing the pump as a way to live a more ‘normal’ life (ie-normalcy).
By the way, people who know Steve including his patients call him Dr. Gadget. So, truth be known, he loves new technology but also respects the role of psychology in successful diabetes care.
July 10th, 2007 at 1:50 pm
In this world of blogging, I’ve learned that I open myself up for a lot of criticism if I ever dare to challenge emerging technology. After all, isn’t the purpose of such advances to make our lives “better”. Question is: who does the judging? The example I shared was a judgment by the family itself. I simply concurred with their assessment of how CGMS has complicated their lives and not resulted in the quality of life they were hoping for. It’s still not too late for this to change and I am working to help make that happen. The moral of my story was that technology (as great as it is) must be tempered by our humanity and is not an “end all and be all” unto itself. So, I hope Becky didn’t interpret my thoughts about CGMS as dismissive. On the contrary, we are on the cusp of major changes in the way we think and act regarding diabetes management. But, like the first person on the block to own a car, or cell phone, computer, or whatever new technological wave that washes over us, this is not done without some consequences to our lives. Not all stories turn out as well as Becky’s (although I hope that most WILL). As Kevin points out, we must better undertstand our behaviors, attitudes and beliefs about our ability to manage diabetes and balance that understanding with the constant tide of technology that seems to be coming at us faster and faster each year.
August 26th, 2007 at 5:02 am
Before I start, I have a child with Type I diabetes, he is 5 years old and has had diabetes for about 20 months now.
I read this post and thought “I know parents like this”. What Steve was getting at was one parent who is over protective of their child, yes Diabetes is dangerous, yes Diabetes can cause hospitalization and yes it is difficult letting your child stay with someone else overnight (my son has stayed overnight 3 times since being diagnosed). But the aim for me is to make sure his life has as normal life as possible, while still doing the best we can with his Diabetes.
And to make his life normal, we need to let him sleep through the night, we need to give as much attention to his younger brother and sister, we need to make sure he does not use his diabetes as an excuse for things (if he is misbehaving he gets a test - and if that is normal he is on the naughty step), we need to make sure he lives as much of his life as he can.
I love my son with all my heart, and I would do anything for him, anything at all, and although sometimes it is hard we believe that the most important thing is to not smother him and let him have a live - and I know it will be a long healthy life, because we have bought him up to make the right choices - about everything in life, not just diabetes.
I work in technology, and everyday see people who have forgotten that technology is just a tool to achieving something - and in the case of diabetes the purpose of the tools should be to give better control AND to give move freedom.
We are on an insulin pump and would not go back, but this is because it has provided my son with so much more freedom - his control is a little better, but only a little better - but the difference is our lives (the whole family) is immense.
By the way, my thought ‘I know parents like that’ that I mentioned at the start of the post was referring to a family I know in which the youngest son is treated with kid gloves and is completely smothered, all the time. This boy does not have diabetes.
October 4th, 2007 at 4:10 pm
I have read the above blogs and find it interesting that in all the families that have used the CGMS systems their comments are focused on the parents sanity. I just wonder what impact seeing blood sugars posted constantly on your hip has on a child with diabetes? Maybe it is comforting to the parents that an alarm goes off when ever the child is low but is it comforting to the pt to see blood sugars climbing after eating and than wonder just how high are they going to go? My other question is does long term use of a CGMS device pay off in A1C results? I think it may be a good idea for the occassional use to make sure carb ratios are on target and basals are set correctly but is there any research that supports these devices have better longterm outcomes than just using a meter?
December 7th, 2007 at 11:22 pm
technology has come along way. the bad side of that is how it has changed and affected people’s life style. I’ve personally have a couple friends who have both type 1 and type 2 diabetes. I don’t know if this is a coincidence, but they both do not exercise very much as well as have a very poor diet plan. They both sit on their butts in front of the computer a minimum of eight hours a day.
one movie that i would highly recommend anyone to see it is called
“SUPER SIZE ME”. For those who haven’t seen it, it’s a real eye opener!!