Tuesday, January 15, 2008

Rethinking the "Dark Ages" of Treatment for Type 1 Diabetes

When I was diagnosed with type 1 diabetes as a 7 year-old kid on July 24, 1976, not much had really changed since the discovery of insulin. I began this trip using Clinitest urine testing and that lasted for over a decade. I made slight adjustments to my short-acting insulin if my test results were on the high-end of the scale. Blood glucose monitors were introduced in the mid-1980's, and I recall my family was one of the first to get a meter (since there were two of us who had it, I guess the price was justified); but the other kids I knew used color-coded strips and they told stories of how they could slice the strips in half and double the number of tests they got from a single vial. I remember thinking that was pretty cool.

When I was quite young, I did experience some problems with nocturnal hypoglycemia, and I would wake up in the middle of the night screaming with the most horrible nightmares. I was taken to the hospital as they tried different insulin regimens and finally settled on a combination that worked quite well until the manufacturer stopped making one of the insulin varieties I relied upon for glycemic control. This was my first, rude introduction to the business of diabetes. I struggled to find a comparable insulin with the same kinetics, but I was told, that's the way things were.

Aside from insulin, treatment consisted of adherence to a diet of largely whole foods with strict limits on refined carbohydrates (bread, crackers, rice, potatoes, etc.), and a mandate to ride my bicycle, play ball outside with other kids or do whatever else we could to amuse ourselves (my mother didn't want the kids inside, glued to the TV and pestering her while she prepared dinner anyway). In the summer, we got to spend time swimming in the pool to keep cool. For snacks, we were given things like carrot and celery sticks or peanuts that we shelled ourselves, and we drank water from the hose in the backyard when we were thirsty. Occasionally, we would get unsweetened Kool-Aid that my mother sweetened with Sweet & Low.

For much of my early life, I was treated with that supposedly allergenic animal insulin that I have been told repeatedly by promoters was "unpure" and was supposed to cause all kinds of allergic reactions (although I didn't have any) and I did not have the wild gyrations in my blood glucose levels that kids with diabetes seem to have today. My older sister, who was diagnosed with type 1 in 1969, did have some visible examples of lipodystrophy, but over time, that all but disappeared, probably due to greater purity of the insulin starting in the early 1970's. In fact, I could make a fairly convincing argument that our lifestyle was actually far superior to the way many kids live today.

Interestingly enough, I have actually had parents of newly-diagnosed children make the bold claim that I grew up in the so-called "dark ages" of diabetes care, but I beg to differ with that assessment. Although I can't know for certain because we didn't have an accurate method for monitoring, I believe my blood sugar levels were within a reasonable range. In fact, when I had my first hemoglobin A1C test done (remember, I lived for quite a while before that test was created), my doctor told my parents to keep doing whatever they were doing. Because I have yet to have any real complications so far, I would dare say that I was pretty well cared for in spite of suggestions to the contrary.

In 1982, Eli Lilly and Company received FDA approval for Humulin, which was supposedly human insulin -- just like the body makes (in reality, it is synthetic, a good comparison is the difference between artificial vanilla and natural vanilla -- it tastes similar, but not exactly). I recall that company advertised the heck out of that insulin in magazines like the ADA's Diabetes Forecast and elsewhere, but almost no one I knew with diabetes switched because doctors were reluctant to switch patients who were already doing well with a prescribed treatment plan. Also, the new synthetic human insulin was more expensive and offered no apparent benefit. It wasn't until the company announced plans to discontinue those insulins when patients switched to Humulin en masse.

On the surface, the argument seems logical enough -- that humans should use human insulin, but the reality now looks rather different. First, there is a growing body of evidence that now suggests that human insulin is what the body's immune system is attacking, thus it is one of the causes of type 1 diabetes. In May 2005, for example, the journal Nature published an article which suggested that insulin may itself may be a primary autoantigen for autoimmune diabetes. But the 2005 article was done in mice, and there are sufficient differences between humans and mice to remain skeptical of this finding, even if it was an interesting possibility. But this month, in the January 4, 2008 edition of the journal Current Opinion in Immunology, appears to confirm that finding, and I suspect additional studies will further validate this.

I would add that the SEARCH for Diabetes in Youth, a five-year, $22 million research project that ended in October 2005 jointly funded by the CDC, the NIH/NIDDK and JDRF, found that a growing number of children with a clinical diagnosis of type 2 diabetes also now had signs of autoimmunity. We also know that patients with type 2 who initiate insulin therapy also start to show signs of autoantibodies normally associated with type 1.

Elizabeth Mayer-Davis, Ph.D., the principal investigator for the SEARCH study told JDRF's Countdown in March 2006 "We didn't expect that some 30% of children with a clinical diagnosis of type 2 would have positive diabetes autoantibodies."

With that being the case, we should give serious consideration to the impact that using so-called human insulin (and perhaps moreso with non-insulin products like insulin analogs) have on the population this medicine is supposed to be helping.

In retrospect, I'm not convinced that I lived in the "dark ages" of diabetes treatment and witnessed a great awakening while I was growing up. In fact, I would argue quite the opposite. Sound dietary and exercise habits, combined with highly purified animal insulin was far better than today's kids have it.

12 comments:

Molly said...

Scott,
Your story could have been mine. I was diagnosed in 1975, and lived the same life. It was dark ages in regard to blood testing and carb information, but I too, think that I maintained decent control. (probably in part due to the restrictions..)
As a person with an actual "insulin allergy" (I can't take insulin without injectable steroids) I was interested in your human insulin thoughts. Makes sense.

Araby62 said...

Hi Scott,

Great post. I was diagnosed in the latter half of the 'dark ages' myself (early 1983), and the photo of the Clinitest kit brought back memories. No wonder I still hate the color orange :-)

I think the advances in home blood glucose monitoring have made things immeasurably easier for me personally. My mom got me one of the first AccuChek meters about a year after I was diagnosed (as I recall it was the size of a brick!), and I think part of my luck in avoiding complications has been thanks to accurate BG results to go on for much of my d-life.

Though I don't know as much about the differences between human insulin and pork/beef as you do, I personally haven't been as affected by the switch to Humalog/Lantus. In fact I'd have to say my control has improved 150% on Lantus--no more Lente rollercoaster! Also, I had lots of problems getting good postprandial numbers using Regular insulin.

That said I'm still a little old school when it comes to diet, I don't just 'cover it with insulin' as today's kids are taught to do. And though I'm sure the pump is great for those who use it, for now I'm sticking with injections.

Too bad today's kids don't get to experience the occasional exploding test tubes, though. That one I miss! (Ha!)

Minnesota Nice said...

Very interesting post Scott. Lots here for me to contemplate. I was dx'd in '74 and know that if I was following the exchange system today, my control would probably be better.

I smiled when you said you drank out of the garden hose.......when my nephews ask for bottled water, my sister's response is, "I drank outra the garden hose - you can too".

Lyrehca said...

Greetings from another old school type 1, diagnosed in '77.

Interesting idea about the older insulins (I was on regular and NPH for years before moving to Humulog in 1996 or so) not causing the many lows people seem to have today. I tested my urine for awhile (and often saw that orange 4-plus reading) and when blood meters came out, occasionally tested, with assorted results and A1c tests always considered "good" by the standards of the day. However, in the mid-1980s, I swam on my high school swim team and while I would always eat a snack before workouts, I *never* remember having the kind of insulin reactions I regularly do today (i.e., I remember few insulin reactions of my youth, although there were certainly a few doozies) despite some intense workouts.

I have never really thought about that connection before. Interesting. I may just end up posting about it sometime.

Donna said...

Hi Scott,
I was 7 when I was diagnosed, too. I was diagnosed in 1970. All your references to test tubes, clinitest, etc, brought back some intersting memories for me. :)

Colleen said...

Hi Scott, that was a really interesting post. I was diagnosed with Type 1 diabetes in 1968 (I live in Canada) and got a glucometer in about 1983 or so mainly because I was doing a lot of mountain climbing and my doctor recommended it as a more accurate check on my blood sugars. I had to cut my insulin in half when I was on some of the longer 10-hour plus climbs. In those days I used animal insulin and it wasn't until Novo Nordisk pulled all of the 26 or 28 different animal varieties that I went on to so-called human insulin. I used it for 5 hellish years, lost complete control of everything, couldn't tell when my blood sugar was low, was blacking out all the time, my weight dropped to 40kg (88lbs), and I had to stop climbing and hiking. I went back on to animal insulin and have regained that precious stability. I will never use synthetic insulin again.

Too many people refer to those days before patents trumped safety as the dark ages. It's a real tragedy. Now the synthetic insulins are being pulled when their patents expire and everyone is being marched towards analogues. With excellent websites like yours maybe people will get more objective information and begin demanding government action.

Canada has asked the World Health Organisation to list animal insulin as an essential medicine because some people need it. The US could and should do the same if Americans started pushing for it.

Bennet said...

Scott

Do you think that the old insulin and the new artificial vanilla flavoring variety differed in composition? I ask because I read recent articles about c-peptides and how maybe they do something when they have been assumed not to and that the synthetic insulin doesn’t include c-peptides.

Did the old insulins you grew up on include these or other compounds that may offer a reason, other then getting out of the house and being active, that you experience good control in the “dark” days of your youth.

I guess that probably isn’t the case if insulin may itself be a primary autoantigen for autoimmune diabetes.

Chrissie in Belgium said...

Hi Scott and all of you. I agree and yet I also don't agree that those were the good old days! I was diagnosed at the age of 10, in 1962! Everything I was taught back then still holds true. Joslin was great! Nevertheless the insulin pump didn't exist then and the pump really turned things around for me. The food exchange system I feel is far superior to the "eat what you like, count the carbs and bolus" doctrine of today. At least for me, proteins and fats and foods of different glycemic index so greatly influence my bg values that JUST counting carbs is totally insufficient as a means of attaining good bg control.

Today the insulin piump allows me to deliver insulin in very accurate and small doses. In this way I am able to accurately prevent a bg that is beginning to get out of control BEFORE it has really turned into a problem. I need much less insulin to prevent a problem than to fix a bg problem. Prevention is much more effective than treating a problem that has already arisen. Ketone blood strips didn't exist and these too help me prevent a problem before it turns into a major crisis! Nevertheless all this prevention is only possible if I test and test and test. Yeah my fingertops are in bad shape!

And yet some things have really gone in the wrong direction. The cure was always promised within the next 10 years. What bullshit! Removal of animal insulins and different varieties of insulin that allowed patients to find the insulin that best fit their individual needs, calling our current insulins "human" when they are not at all "human" and removing c-peptides from the insulin chain just b/c they didn't know exactly what they did! OMG what stupid decisions! I was told that human insulin WAS exactly like human insulin! This refers to your next blog entry about what truth really is. What true honesty demands of us! Another very interesting blog. Few people are truly honest. This hit me as a shock many years ago when I realized how everybody goes around propounding the value of truth and yet few people are truly truthful. Society views a really honest person is a total pain in the butt, a trouble maker and not so pleasant to have around.

So I would like to be able to pick and choose from the past and what the present provides! I love your blog Scott and I really appreciate knowing the people of the diabetic community.

Scott said...

Hello everyone, and thanks for your feedback. My intention with this post was meant to call attention to the fact that perhaps, just maybe, the old days weren't really so backwards after all. To be sure, there are some developments that for some people have had a profound impact: for some its the glucose meter, for others the precision of dosing with a pump in increments previously considered impossible. In part, we may not have had the latest technology, but the "eat what you want and cover it with insulin philosophy" isn't a substitute for controlling what we eat.

While I would not deny anyone the right to use the newer insulins, at the same time, should we deny others the older ones if they worked well?

All of this is meant to be food for thought.

Scott K. Johnson said...

Great post Scott.

MES said...

Scott,

I'm a new fan to your blog. My husband recently sent me a link to it. Thank you for your posts!

I was diagnosed just before my 7th birthday in 1990. I did shots for 10 years, then moved to the pump which I've been on since. My husband and I have a 1 year old daughter who thank God shows no signs of having diabetes at this point.

I was wondering what you think of this information? Have you done any research on the diabetes/vaccine connection?

http://www.nvic.org/Diseases/Diabetes.htm

Mary

john sewell said...

hi mate,1981 for me,syringes kept in tubes full of metholated spirit,anyone else remember or was it just a uk thing??? keep up the good work