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hi Laura and Scott!

Scott, thanks for your comments – I appreciate them. I certainly wouldn't want diabetes to be seen as self-inflicted and agree that those impressions need to change, dramatically.

It's interesting to think about prevention. What I had meant in the original post was that most people with diabetes who are lucky enough to manage it well will indeed live a very different life than those with stage 4 breast cancer.

John Edwards didn't say, "This will be very similar to anyone with poorly controlled diabetes who is blind and has had multiple limbs amputated and is on dialysis." He compared his wife’s condition to anyone with diabetes who takes insulin, and I don't think that comparison is accurate. Now, to compare poorly controlled diabetes with complications to advanced breast cancer – yes, that would be fairer.

Having witnessed advanced stage 4 breast cancer so recently in my mother, I can say that the day-to-day experience for those patients is very different than for those with type 1 or type 2 who are in good control or those with early stage breast cancer. With breast cancer that advanced, you can't "choose" to manage it intensively and know that you can influence the outcome, while you can with diabetes, even if you do have a genetic pre-disposition to complications. While many patients may not know if they have that disposition, virtually all patients can do a lot to reduce their risk of complications. It's hard to do, but possible, and I know cancer patients in advanced form certainly wish they had more control.

While some diabetic complications certainly have a genetic component, few patients (if any) who are in good control will be given a prognosis that is as dire as advanced breast cancer. None of us knows what the doctors have said to Mrs. Edwards, and it's none of our business, but the average person with diabetes in good control has a very different prognosis than someone with advanced breast cancer.

Mrs. Edwards and her family are an inspiration to us all - I feel sorry to be discussing this so clinically and in a detached way. I hope all the best for the entire Edwards’ family. There are some incredible stories of recovery even at stage 4, although the ones I know typically do involve herceptin, which apparently is not an option for Mrs. Edwards.

Here's hoping that the cancer research improves dramatically and that Mrs. Edwards and her family will be able to take care of it until then. Here's also hoping that diabetes research for prevention and treatment continues to strengthen - no one ever said either was adequate.

Type 1 diabetes is not preventable. Diabetes complications are not always preventable with Type 1 diabetes. There is a genetic component to certain complications (kidney) that do not correlate to control. This blog post was inaccurate all the way around. Unbelievable.

Kelly,

Thanks for the update ... I was certain you of all people probably meant more than what you had written, so your clarification means a lot!

You are absolutely right that diabetes need not be a death sentence at it is with late-stage cancer. Unfortunately, diabetes is too often seen as self-inflicted therefore the people who get it are too often seen as "deserving" of their condition. As a result, diabetes tends to be seen by much of the public as "less deserving or needy" of public funding, and the NIH dollars speak for themselves on this. However, the sheer size of the epidemic is now growing so fast (especially as the baby boom enter their senior years) that its become clear that society can no longer afford to ignore diabetes as they had done for so long. Too bad the costs of those decisions will be picked up by taxpayers for decades to come!

Just woke up here in California, both literally and figuratively. You are COMPLETELY right, Beth and Scott. I am SO sorry, I can't believe I made that mistake!! Thanks so much for your posts. And I agree Megan that is a huge blow and of course you're right.

I'm sitting here wondering, what was it that drove my thinking.I HAD been thinking, as George suggested, of type 2 only as far as prevention goes, but I'd been thinking about all diabetes in terms of management, if one has the resources, and how different it is from very advanced breast cancer that I am so sorry to hear Elizabeth Edwards has.


A few things come to mind in how I think about differences in diabetes (type 1 and type 2) and cancer:

#1: In short, and this is a very US-centric, developed country-centric view -- most people with diabetes (both type 1 and type 2) have the option of not dying.

#2: Another way of saying the same thing - you can't intensively manage stage 4 breast cancer. There are a lot of things you can do but you can't impact the prognosis the same way you can with diabetes.

#3: Next, what comes to mind is a pretty compelling conversation I had with Phil Southerland, who many of you would know as the founder of Team Type 1 - one of the most motivating guys around (http://www.teamtype1.org/team/southerland.html). I was telling him about a talk I had heard Jim Hirsch give, author of Cheating Destiny (and fellow blogger here on our site), at UCSF. Jim was saying that one of the tough things about diabetes (and I think this does hold true for both type 1 and type 2, as well as gestational, LADA, MODY, etc) was that in some ways, we're all just trying to get to "normal" with our blood glucose - we're just trying to get to the baseline of what everyone else without diabetes lives with every day and what most never even think about for a second. Speaking for himself, he said it could be de-motivating just trying to get to back to "normal" - not even "good," just normal for the population, which is what a 100 blood glucose (~5 mmol) is! Just what everyone else without diabetes took for granted (of course most of our friends and families don't take a 90 mg/dL blood glucose for granted - but I think he meant the larger community behind diabetes).

So, I was relaying this to Phil, his response was "oh NO! I totally disagree!" He said he's never trying to get to average, that he's trying to do as well as he can possibly do, and many times that is far better than he would OTHERWISE have been doing without diabetes. It was a philosophical difference in thinking - but it's true, you can actually do better with diabetes than you might otherwise, while this isn't true with cancer.

But what Phil said rang so true to me ... I realize, I'm lucky, because most of the time, I don't really even think of my own type 1 diabetes as a disease. Of course it is - I test a million times a day (or it feels like it!), I am constantly doing the math in my head about what I am going to or not going to eat and what that means in terms of insulin (one reason I love the pump is it does so much of this math), whether the insulin should be extended, etc., I berate myself for not figuring out what I'll eat 30 minutes in advance of putting the food in my mouth, I think hard about what a walk to the Mission district is going to do to my blood sugar. But, it's just become a way of life. I would feel very different if I had stage 1 breast cancer, much less stage 4. (Of course I have bad days - see another blog from yesterday at Revolution Health http://www.revolutionhealth.com/blogs/kellyclose/carrying-all-the-stuf-3123.)

So I'm saying type 1 or type 2 diabetes is not serious. What I liked most about John Edwards comment was actually that the comparison is truly important, it makes people realize was a terrible disease diabetes is - and it is absolutely comparable to cancer. But you can make more of a difference with diabetes than you can with cancer like Mrs. Edwards has. If the best case scenario happens, and the cancer lingers in the background, it will be fabulous, but there will be more luck involved than there is with diabetes.

#4: We just returned from Diabetes UK, where the focus of our work was much more on type 2 diabetes than type 1. One of the things we were focused on in our trip to Glasgow (my husband and I run a small firm that focuses on new product development in diabetes - then we write about this work in two newsletters for professionals and patients) was the treatments for type 2, since Byetta was recently approved there, and since there was a lot of excitement about giving patients a tool that would help them reduce their A1cs and glycemic variability as well as help them lose weight. We think it's a new era in treatments for type 2 diabetes from where we stand now.

#5 In contrast to this, I watched my mom die eight weeks ago from metastatic breast cancer. She had exactly what Elizabeth Edwards had - breast cancer that advanced precipitously from early stage to stage 4. I sometimes think that our tools to control diabetes are very blunt - for example, taking insulin once or a few times a day when everyone else without diabetes has just the right amount of insulin coursing carefree through their systems, at the right time. If you've spent time with someone in chemotherapy, as I'm sure many of you have, you don't think of insulin as a blunt tool in quite the same way. Insulin is a breakthrough - it's what keeps all of us type 1s alive and it's what keeps many people with type 2 alive (that's why the math of 64% of type 2 patients being out of glycemic control in the US and just 29% on insulin always seems troubling).

Of course, these comments above relate mostly to the developed world, where we are much luckier than in developing countries where even getting insulin can be so hard.

***

What I should have said was that treating diabetes can be, with the right resources and support and reimbursement for healthcare professionals (which needs dramatic retooling), treating a disease that doesn't have to get worse. Indeed, Phil has shown us all how his body is actually in better shape with diabetes than it otherwise would be without diabetes. On the type 2 front, we've learned from the DPP that type 2 can indeed be prevented, or even reversed, with the right care.

Unfortunately, this isn't yet true with advanced breast cancer. There is encouraging research and it's my fervent hope that Mrs. Edwards can benefit from the research (Avastin trials?) in time to turn around the course of her disease. I just feel lucky that the course of diabetes - and this is both type 1 and type 2, however different they both are - is a little more in our own control.

Last, on the media - you are completely right about the public perception of diabetes. That was very relevant to a talk Bill Clinton gave at a forum on diabetes in New York last week, and that I'll be writing more about here and at the "Diabetes - Up Close and Personal" blog at Revolution Health (www.revolutionhealth.com). There is such an incredibly long way to go, and I'm glad the former President and Novo Nordisk as a company are behind the change.

Again, thanks so much for turning on the light bulbs for me! And for listening.

***
Postscript:
Scott, in terms of the Diabetes Prevention Trial, I learned last year from one of the trial investigators that it is now thought that actually perhaps the dose of insulin used was too low, and that the outcomes they were hoping for (preventing type 1 in those at high risk) might well have happened had the dose been higher. The study design for prevention trials is complex of course. For patients with type 2, 2006 was really the year of prevention in a lot of ways, where patients could see that the physiology of their bodies could potentially be changed - fundamentally - with various treatments. Nothing is simple because as with the Edmonton trials, the side effects are sometimes more complicated than the underlying illness. We'll have to see where this goes, and as with cancer, prevention efforts are most effective early on.

***

I actually don't have a huge problem with the comment. I think it's Mr. Edwards' attempt at staying positive- she CAN live with this, just like we can live with diabetes. Further, I don't really think people can be expected to make perfect articulate speeches when receiving the blow the Edwards family did this week.

"One is preventable, one not;"

???

I am not sure you can even say all instances of Type 2 are preventable. But definately Type 1's are not to blame.

It's not my fault!

I agree that metastasized cancer isn't really comparable to diabetes, but I also disagree completely with your logic. First of all, most of the 1.1 million Americans with immune-mediated diabetes mellitus (what type 1 should be called) are likely to disagree with your characterization that diabetes is "preventable". You should know better. While it has been replicated and proven conclusively in several different studies that the most common form, type 2 diabetes, can usually be prevented, so far, preventing type 1 (whose incidence is also growing, by the way) has proven to be an illusive dream.

Most notably, the NIH-funded Diabetes Prevention Trial Type 1 (DPT-1), which consisted of two clinical trials that sought to delay or prevent type 1 diabetes. Nine medical centers and more than 350 clinics in the U.S. and Canada took part in the two trials of the DPT-1. Yet in spite of all the expense incurred, neither low-dose insulin injections in people at high risk for developing type 1 diabetes nor insulin capsules taken orally by people at moderate risk for type 1 diabetes were successful at preventing or delaying type 1 diabetes. (BTW, the findings of the low-dose insulin injection trial were published in the May 30, 2002 issue of the New England Journal of Medicine.)

Then there is the issue of complications. Again, at least in the case of type 1 diabetes, it now appears that some of the complications assumed to be attributed to glycemic control have their own etiology which is unrelated to glycemic control. Also, keep in mind that the DCCT did not show an elimination of complications with improved glycemic control, rather, the incidence was reduced. But even more telling was the fact that the actual reduction in incidence varied considerably by each type of complication, which strongly suggested even then that there was more to the story than glycemic control alone.

For example, several years ago, Swedish researchers' findings suggested that autonomic nerve autoantibodies play a key role in the development and progression of neuropathy in individuals with type 1 diabetes. The link to that study is provided for your reference. "Autoantibodies to Autonomic Nerves Associated With Cardiac and Peripheral Autonomic Neuropathy"; Viktoria Granberg, MD1, Niels Ejskjaer, MD, PHD2, Mark Peakman, MD, PHD3 and Göran Sundkvist, MD, PHD1; Diabetes Care 28:1959-1964, 2005.

http://care.diabetesjournals.org/cgi/content/full/28/8/1959

More recently (last year, in fact) researchers at UC Davis Medical Center in Sacramento published another interesting study in the journal Diabetes which also suggested that an overactive immune response in type 1 diabetes appears to cause blood vessels to become inflamed and damaged. The UC Davis researchers also identified several inflammation "biomarkers" that give early warning of this reaction. The link to that study is also listed for your reference. "Increased Monocytic Activity and Biomarkers of Inflammation in Patients With Type 1 Diabetes"; Sridevi Devaraj, Nicole Glaser, Steve Griffen, Janice Wang-Polagruto, Eric Miguelino, and Ishwarlal Jialal; Diabetes 55: 774-779.

http://diabetes.diabetesjournals.org/cgi/content/abstract/55/3/774

I am disappointed. Your own failure to acknowledge that there are several different types of diabetes with unique etiologies only helps to perpetuate widespread misinformation that "healthier living" can somehow eradicate all forms of diabetes, including type 1. In doing so, you help to perpetuate the underlying presumption that the person, and not their disease, is to blame. Therefore one notable difference between cancer and diabetes is the fact that this seldom occurs with cancer, except possibly in the case of lung cancer that occurs in long-term smokers.

As a community, patients with diabetes need to work harder at changing public perception of our condition. Pharmaceutical companies use images and slogans of smiling, supposedly diabetic patients holding syringes, glucose tablets and blood glucose monitoring equipment, which then becomes the public face of diabetes, yet the underlying disease is never revealed. As long as we continue to support this, or do nothing to change that perception, diabetes will forever be viewed as a self-inflicted condition. The end result is that while cancer is seen by the public and the medical profession as public enemy #1, diabetes is viewed as "punishment" for unhealthy living. Should we be surprised, then, that per capita spending by the National Institutes of Health on all forms of cancer exceeds per capita spending on diabetes by an incomprehensible margin?

Which one is preventable? Cancer? Type 1 diabetes is NOT preventable.

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