May 31, 2012

Problems for Diabetes Patients

As I research diabetes and the related occupations that treat those of us with diabetes I keep making small discoveries that are upsetting to me at least. I read several medical blogs by doctors and read some of the blogs by diabetes educators and a few other blogs by other professions related to the treatment of diabetes topics. With a few notable exceptions, many doctors, all diabetes educators, and all dietitians want us to be complaint and stupid, letting them tell us what to do and what not to do.

I am reading about more people on diabetes discussion boards and diabetes forums who think like I do and are tired of being treated this way. Even those in my local diabetes group are now echoing these feelings. Although we tend to all go our own way and have differences of opinion on many topics, we are all in agreement that the current atmosphere for people with diabetes is a lose – lose situation. While we are doing exceedingly well as individuals, all of us have learned to ignore anything from the USDA and the medical groups that promote and advocate following this way of eating and nutritional advice.

Yes, we all want nutritionally balanced meals as much as possible, but we know that we cannot depend on our medical and related diabetes professionals to give us good advice. They constantly repeat the same thing – whole grains, low fat, and they will not budge from this mantra. This is what the USDA preaches, the American Diabetes Association trumpets, and the American Association of Clinical Endocrinologists follows. Then you add the American Association of Diabetes Educators and the Academy of Nutrition and Dietetics and you are hammered again and again and again with the same boring meaningless mantra.

Fortunately, some of us have friends or relatives that are nutritionists that are not under threat from the Academy of Nutrition and Dietetics (AND), and they will work with us at various carbohydrate, protein, and fat levels to help us balance our nutrition. Their only concern is seeing that the balance of nutrition is present. For this we listen and thank them. We also promise to support them and stay in touch with our state legislators to prevent the AND from slipping something through without a fight. And they have tried, but thankfully nothing came of it this year.

The other common item most of our group agrees about is all the studies that insist that we eat certain foods if we have diabetes as we have decided that most of these studies are misleading and not for us. Most of the time these studies have a specific agenda and nothing to do with balanced nutrition or even fair nutrition. We are tired of studies claiming red meat is bad for us, that a specific vegetable or fruit is a super food that benefits people with diabetes. What they do not even consider is that more and more people with diabetes are figuring out that what works for one person does not always work for another person. We are downright tired of this one-size-fits-all advice that we know probably does not work for us.

Another common agreement is the studies that are done to prove that one medication on top of another medication, plus additional medications added to these is the only way to treat type 2 diabetes; we know this is not for us.. We are disappointed that our researchers have a very limited ability to think for themselves and that they jump to the tune of Big Pharma every time the bell jingles. We are disgusted that our researchers are incapable of thinking outside the box to give us something to hope for and solutions not requiring medications stacked one on top of another. This is one of the reasons most of us are using insulin. We obtain better diabetes management results and have none of the side effects associated with the oral diabetes medications.

When the researchers start calling the tune and telling Big Pharma that their ideas are unworkable, then we may see some innovation and meaningful studies where study participants are everyday people and not those that fit the strict criteria to slant the study in the direction desired. We understand age ranges and people with other chronic diseases being eliminated from some studies. What we disagree with is studies where people that might be concerned about testing their blood glucose on a frequent basis are automatically eliminated because the researchers and the funding agencies are looking for people that do not care about testing so that they can show a reason for limiting testing supplies for those that want to test and maintain excellent diabetes management.

When we think about all the money funneled into poor and useless studies, we have to think about how much closer we might be to an actual cure if the money had been utilized more efficiently. Efficacy in our studies and their usefulness should be a priority. Another topic that is a sore point with us is universities that have results from research that is on the cutting edge of a breakthrough and this is purchased by a pharmaceutical corporation and that is the last we hear about it. These are things that need to be exposed and if the research is useless, the American public should be told. While we may not always believe the results, because we are suspicious by nature, we deserve to know whether it was purchased to be buried and nothing more done with it or if it was indeed only a minor piece of the puzzle.

To this, I would say that if nothing was forth coming in three years (or maybe longer), but no more than five years, then rights would return to the originating university for continued research and development. Only if some checks and balances are put in place can we be sure that good research will not be put in mothballs because a large pharmaceutical company wants to make larger profits by burying promising research.

It was a little surprising that while we have been discussing the above; a study would be published adding to our perception of what happens. This study published in the Journal of the American Medical Association on May 1, 2012, declares that the majority of clinical trials are small. The study points out there are significant differences in methodical approaches including randomizing, blinding and even the use of data monitoring committees. This is the largest comprehensive analysis of data in and finds that clinical trials are coming up short of producing high-quality evidence needed to guide medical decision making in a clinical setting.

This evidence points out the problems we a patients will continue to face in obtaining informed information and proper treatment of medication usage, clinical care with application of the latest techniques and possible best treatments. If our doctors are unable to rely on proper evidence, how are we going to have confidence we are obtaining the best in care.

Our group does agree that there needs to be an independent agency (or committee) that oversees all of the study applications before they receive a penny of funds. This agency should be independent of any pharmaceutical company, university, or government. Where they would obtain their funds to make a modest living is a point we have not solved. We do agree that the number should be an odd number, but no more than fifteen members, and that if someone is absent, an alternate could be selected. We also agree that the members should be from retired researchers, patients, and some non-pharmaceutical or related CEOs. Term should be limited to five years and some replaced every year on a rotation.

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