I regularly read Health Affairs for my job, and was excited when I first saw the title on the cover of this month's issue (http://content.healthaffairs.org/content/31/1.toc).
And then I started to read the articles...
First, they almost exclusively focus on type 2 diabetes. Thus far (and I'm about halfway through the articles), not a SINGLE ONE is about type 1 diabetes. And, the strong focus of a lot of the articles seems to be about the whole "lifestyle/type 2 diabetes connection" and prevention.
In most of the papers presented, they at least mention that their focus is on type 2 diabetes. ok, that's fine if that's what your research focuses on.
But the worst article I have yet to come across is the one that was also featured today in the NY Times titled, "Diabetes's 'Health Shock' to Schooling and Earnings: Increased Dropout Rates and Lower Wages and Employment In Young Adults." (featured in the NYTimes here).
Now, I'm not here to start any heated debate about which "group" is more deserving of research. I also know that there are many people who fall outside of the traditional "type 1" and "type 2" diabetes categories. I also know that there's a lot we still just don't know about all kinds of diabetes and genetics. Heck, we still don't even know exactly what causes type 1 diabetes!!
But this article takes the cake (pun intended) with this statement: Limitations: As noted above, we were unable to distinguish between type 1 and type 2 diabetes in our data set. However, the abscence of such a distinction should not be considered a major problem. Commonalities between the two types continue to emerge as clinical knowledge of diabetes evolves [citations]. These common features further blur the line between the two, if in fact one exists at all."
What the fructrose?!!??!!?
The article goes to basically conclude that diabetics obtain less education and have lower wages when compared to "non diabetic" peers. To determine if respondents were diabetic, they asked them, "Has a doctor, nurse, or other health care provider ever told you that you have or had high blood sugar or diabetes?"
There are so many problems with this article, I don't even know where to begin. And the more I read it, the more I get angry.
1. Their method for identifying "diabetic" respondents is flawed. I had a friend who, not long ago, was told he had high blood sugar during routine blood work. A second blood test revealed normal blood sugar. Just because you're told once that you have high blood sugar DOES NOT mean you have diabetes.
2. This article constantly uses the term "diabetes" generically, with NO differentiation, and talks about the link between obesity and lifestyle factors with the diagnosis of diabetes.
3. The treatment of T1 versus T2 diabetes is, generally speaking, pretty different. I can think of at least four people in my life who have received a diagnosis of type 2 diabetes (2 friends, 2 coworkers). Two of them control their condition with diet, exercise, and monitoring through their doctor's office, and the other 2 take oral medications. I realize that some T2s do require insulin, but even there there's variation, with some just taking long-acting insulin, and others just taking a mealtime insulin. Type 1s require insulin. Period.
4. Then the authors note that their data do not allow them to probe further into the mechanisms driving their results, but go on to list several potential causes that might explain these relationships. Of course, the first one listed is obesity. Then they talk about the connection between employment and health insurance, but let's face it - when you're a type 1 insulin-dependent diabetic, this relationship is far more serious. We need health insurance to survive in the short-term. It's an immediate life-and-death issue, because if we can't access insulin, we die.
Of course the article also talks about the need for prevention, but last I checked, "prevention" only applies to type 2 diabetes, and even there the evidence is dicey. Aren't something like 1/3 of T2s of normal weight at diagnosis???
Ugh, am I wrong to be so angry about this paper? Health Affairs is a reputable journal within the Health Policy community. In addition, more than ever I'm encountering health professionals who don't even know the basic differences between type 1 and type 2 diabetes. I can't tell you how many times in the last year I've found myself explaining the difference to a nurse or equally well-educated health professional who exclaimed upon me telling them that I had type 1 diabetes, "But you're so thin!" or "So do you manage your diabetes with diet and exercise, or do you take pills too?"
Am I overreacting?
I should also note that I did email the author of another one of the Health Affairs articles (Dr. Kenneth Thorpe) and he at least had the decency to email me back and acknowledge the oversight, and agreed to take it into account in future articles.
Ouch. I find this sooo depressing. I'm facing putting my future in the hands of knee-replacement surgeon next month who is totally clueless not only about my fibromyalgia, but about a T2 who controls, for the moment anyway, with diet and exercise only. The protocols for surgery are actually oriented to the insulin-dependent. They're worried about lows; I'm worried about highs and tipping points (another thing they don't get).
So nobody knows anything about us where it counts. Do you think they get that we are all different and that there are more than 2 types?! NoNoNo, that's too much to ask!....Sorry. My own rant!....Blessings on us ALL!....Judith in Portland
If it makes you feel any better, the lack of clear distinction pisses off the T2s too. But not quite as much as the ignorant minority of T1s who moan about being confused with T2s because they didn't cause their own diabetes. I didn't cause mine either.
The paper you are upset about is pretty clearly about T1s. Here is a quote from the CNN report:
About 15,000 people were followed during the 14-year study. Seven to 12-year old students were first surveyed in the mid-1990s. They were then surveyed three more times: 1 year later, 7 years later and the last time in 2008, when they were approaching age 30. The study did not distinguish between type 1, commonly referred to as juvenile diabetes, and the preventable type 2 diabetes, which is usually linked to obesity and sedentary lifestyles.
As they were diagnosed at ages 7 to 12 they were almost certainly Type 1; the percentage of children diagnosed type 2 in that age group in the mid-90s is minuscule.
I agree that does not change the fact that the NYT article is a classic example of journalistic ignorance displaying the writer's ignorance about both types.
Cheers, Alan, T2, Australia
Everything in Moderation - Except Laughter
No, that's not correct. The study used participants who were already in a study (called the National Longitudinal Study of Adolescent Health) at the Univ. of NC at Chapel Hill. They were not asked about their "diabetes" status until the fourth wave of the study, which occurred in 2008 when all the participants were nearly 30 years old.
I actually don't think the NYT article is that ignorant (although I agree the fault is usually with the journalists). In this case, the paper is written so poorly (IMO). There are constant references in the paper to the link between obesity and "diabetes." No where in the paper do they set up that T1 has nothing to do with obesity and "lifestyle" factors, nor do they set up that there's a HUGE genetic component with T2 diabetes (and that 1/3 of people diagnosed with T2 diabetes are not overweight). If some basic facts about diabetes had been set up, I could stomach this a bit better.
Tara Parker-Pope, a health writer for the NYTimes writes with highly variable quality. Although I have at times thought she was a real "tool" (look at this fawning over the totally debunked "China Study"), I think much of the problem with this comes from the scientists, public health advisors and the corrupt influences.
As you note, diabetes can have a huge genetic component (T2 even more than T1) and while lifestyle may influence the expression of diabetes (and it does so in both T1 and T2), it is not a "causal" relationship. Yet we have huge public initiatives (focused on T2) including the "Diabetes Prevention Program (DPP)." Much of this issue is focused around these sorts of efforts. I have written about the DPP before, it is a huge misintpretation of the science. It found that patients who were diagnosed with Pre-diabetes (actually diabetes) could diet and exercise to better manage their blood sugar. Obviously, with better blood sugar control, patients may not decline to have their blood sugar achieve "overt diabetes" levels. This study has been interpreted to suggest that you can "prevent" diabetes since better blood sugar control is not diagnosed as "overt diabetes", something that no sane person could conclude from the study.
So now we have all this cr*p suggesting that you can prevent diabetes by better diet and exercise habits. And if you listen to the rhetoric, if you "prevent" diabetes by diet and exercise, then you "cause" diabetes by overeating and slothiness. Therefore, diabetics caused their own sorry state. And all this cr*p comes down on all diabetics, T1 and T2.
I echo what Alan said about the liklihood that a good majority of them are probably T1, just by virtue of the fact that the subjects were so young when they first entered the study. That doesn't excuse the fact that they don't seem to think it's very important or noteworthy enough to differentiate between the two.
Are you overreacting? I can in no way, shape, or form, make a judgement like that. It bothers you and I completely understand.
It doesn't bother me quite as much because there is plenty of bad research out there to go around. It is not at all limited to diabetes research. At the same time, there's plenty of good research as well, and a lot of it being done with respect to all types of diabetes. It can, of course, be better, but it can always be worse. Diabetics of all types are getting much better care today than 20 years ago when the study started and we can thank the good research for that.
I'm probably in the minority here when I say that I really have stopped caring, to a great extent, about what others think about my diabetes. That attitude gets me through the day when I have to test 10 times, take insuin doses at least 3 times a day, and do the best I can to manage my condition, often, in a very public manner. My job is to take care of myself for my loved ones and help anybody else with their care when and if I can.
My job is not to educate the general public about my condition. Most people couldn't care less and I find it difficult to think of a reason why they ought to without sounding a bit selfish. I am thankful for the people who do care, who have dedicated their professional lives to caring for people like us when they didn't have to, and especially for those dedicated and competeent enough to really make a positive difference.
Thanks for an excellent post. I doubt you're in the minority.
Cheers, Alan, T2, Australia
Everything in Moderation - Except Laughter
See above. The participants did not enter the study because of their diabetes status - they were participating in a longitudinal study and were not asked about their "diabetes status" until they were about 30 years old (in 2008).
My concern about this bad research is the impact that it's having on the quality of the medical care we receive. More and more I'm encountering medical professionals who don't know what it means to be "insulin dependent." When you periodically find yourself in situations where your life literally depends on the treatment you receive from medical professionals, this is frightening.
And are we getting better care? Really? I think we're taking better care of ourselves, and I think a lot of that (at least for me) has to do with forums like this. Like I always say, I've learned more on this site than I EVER learned from an endo. But I've gotta say that the care I received from my pediatric endo team 20 years ago was far better than any care from an endo I've received as an adult.
I think the point Alan made from the CNN Report is that if, indeed, they entered the study as youths, then, odds are, they were probably T1s.
Honestly, I haven't looked at the study so I can't really comment. I'll echo the point you made, again, that if they did not bother to differentiat between the different types of diabetes, then it' a bad study design.
I can't speak, honestly, for anybody's level of diabetes care other than my own. I can say two things about my diabetes care, I have gotten much better at taking care of myself over the last 25 years, and the tools at my disposal have gotten much better at helping me care for myself. I can also say that I've gotten excellent care from the professionals that I have charged with the responsibility to take the professional lead. I can definitely say that if I compare the bar for excellence that I established for my endo 25 years ago to the bar I establish today, that bar has been raised. 25 years ago, the Ominpod and CGM did not exist. Now they do, and my endo can discuss the best use for both with me. For me, that's progress.
One of the biggest changes over the last 25 years, of course, is the advent of the internet and the sheer amount of information at our fingertips. I am, of course, thankful for forums like this for people like ourselves to come together to share our knowledge and experiences. I too, have learned much here. I can however, use the internet to peruse the primary literature and I can see that research is progressing. Whether that research is good or bad is, honestly, not for the court of public opinion to decide. It's unfortunate that the general media do get ahold of primary research and spin it in a way that suits them. I do worry that bad practice gets disseminated and perpetuated through all of the same channels that allow good information to be diseminated.
In the end, it's people toiling away at a lab bench that are going to make the difference. However, we all have to make decisions about our health care based one the information that we have at our disposal. The important point is that we have the good information at our disposal, regardless of where that information comes from.
I think you're misunderstanding - the participants DID NOT enter the study because they had diabetes. It was a general study to track a variety of longitudinal health outcomes. They were not asked about their diabetes status until the age of 30. The study data were more general, just looking at what factors people experience in youth were associated with certain outcomes as adults. If you want a copy of the full report, I can send it to you via email. Just PM me.
No, it's fine.
I believe you. It's a flawed study.
You are not overreacting to this study. Both you and bsc make excellent points.
What I find most interesting are the ideas the NY times article comes up with for why Diabetics generally make less money:
1. Job lock, i.e. not going for a higher paying job for fear of losing health benefits. But generally speaking, don't more higher paying jobs have even better benefits?
2. Employer would not want to hire diabetics because of insurance issues. Possibly, but only if they knew about it beforehand, and I don't know why it would come up before they actually hired you.
What I do find interesting is the stat that diabetics drop out of high school more( even if it's a small margin of difference), though I doubt they'll figure out the correlation anytime soon.
And this is exactly why I wish they had controlled for type of diabetes. Type 1s are completely dependent on insulin, and this makes us completely dependent on having some sort of health insurance. Many of us had to make choices about obtaining higher education or getting a job that could immediately offer us health insurance. Simply so we could live. I don't think the same thing would be seen among young type 2 diabetics.
Yes, higher paying jobs might have better health insurance, but generally speaking you've gotta have the education to get those jobs. Until the passage of PPACA, getting kicked off you parents' health insurance at the age of 18 was pretty common. My sibling (who is not diabetic) was able to forego health insurance while she pursued higher education. I did not have that luxury (if you can call it that).
Regarding employers not hiring folks - I have often worried about this. I work within a field that is fairly close (i.e., we all know eachother). I've been very quiet about being T1 for fear that it could affect my job prospects elsewhere.