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A Call to Change Revamping Type 2 Diabetes Awareness

Thursday, February 13, 2014

Every November is sort of bittersweet, for me.  In one way, I am very excited -- the unity, love and compassion of many, just pours over in our communities.  It is a huge opportunity to spread a bright blue beacon of awareness across the world. Its almost like Christmas time... Diabetes style.

In another way, Diabetes Awareness Month is very frustrating to me... because it is, in many ways, National Recrimination Month.  I can conspiracy-theory-spin this all the way to the bank, but I wont... Instead, Ill just share a few simple truths with you:

1. Type 2 Diabetes Awareness, largely focuses on telling people that their Diabetes is preventable, and that 80-90% of the cases could have been avoided.  Now, Im curious... did anyone send you a survey, or knock on your door asking you how you got your diabetes? Did they ask you what medications you take, what other illnesses you have, or come over and take blood samples from you? No? Oh. Well... Thats because when people are throwing that statistic around, they are usually mentioning either of these two studies... (Most people, or organizations, WONT EVEN REFERENCE THEM. I had to dig DEEP just to find these two.)
• Diet, Lifestyle, and the Risk of Type 2 Diabetes Mellitus in Women: Frank B. Hu, M.D., JoAnn E. Manson, M.D., Meir J. Stampfer, M.D., Graham Colditz, M.D., Simin Liu, M.D., Caren G. Solomon, M.D., and Walter C. Willett, M.D. N Engl J Med 2001; 345:790-797. September 13, 2001. http://www.nejm.org/doi/full/10.1056/NEJMoa010492#t=articleDiscussion
• Lifestyle Factors and Risk for New-Onset Diabetes: A Population-Based Cohort Study. Jared P. Reis, PhD; Catherine M. Loria, PhD; Paul D. Sorlie, PhD; Yikyung Park, PhD; Albert Hollenbeck, PhD; and Arthur Schatzkin, MD, PhD†. http://www.annals.org/content/155/5/292.abstract 

Now... whats wrong with using this to badger people with diabetes? Well, for starters, these types of studies are OBSERVATIONAL studies.  Meaning a.) they rely largely on demographic data from participants, and not on laboratory studied, measured, clinical data,  b.) they make assumptions on what a healthy diet means, b.) they rely on anecdotal testimony on what participants may claim are their risk markers for a family history, c.) they do not account for racial, or ethnic risk markers, d.) they use limited populations of people that may or may not represent the overall population, in certain circumstances (like ALL nurses, which their occupation already may put STRESS as a HUGE factor in diagnosis.), e.) they dont tell how many of the total participants in the studies were actually overweight or obese, regardless of diabetes development, f.) they control for common things, like metabolic syndrome, but not for other critical factors, such as different illnesses, medications, pollution, toxins, etc., g.) They assume things like high triglycerides, high cholesterol, and high blood pressure, are ALL preventable things (completely ignoring their genetic components), and whats worse... h.) These studies assume that because the rest of the people were able to, somehow, avoid getting Type 2 Diabetes... that those people who did get it, should have been able to avoid it, too! I think that its very evident that we are all UNIQUE, as our fingerprints, and that unless we were able to magically step back in time, and redirect those people who got Type 2 diabetes, we will never truly be able to tell if they could have prevented their illness just by comparing them to other strangers! Thats like saying I could have avoided getting late to work, like Jenny did, without taking into account a.) my car breaking down, b.) people having an accident and blocking the main roadways, c.) tornado warnings being issued, etc., etc. These studies tell you NOTHING about these people other than many of them have a poor diet, like MOST Americans do.  Yet MOST Americans will NOT develop Diabetes.  These studies will NOT tell you anything about the chemistry inside these peoples bodies, or even WHY they might be overeating, or addicted to nicotine, or alcohol.  As discussed in my About Diabetes post, Type 2 Diabetes is a HELL of a lot more complicated than these simplistic studies.  

I am SICK and TIRED of hearing this old line used to badger poor people who got a disease they DIDNT WANT.  NO ONE wants Diabetes.  NO ONE. While I cant say that there arent folks out there, in the world, who love food... or love to pig out, or drink, or smoke, for the sake of doing these things... I can tell you that that is HARDLY an excuse to say everyone else who developed a disease was EXACTLY LIKE THAT. Whats worse are the George Burns of the world who smoked till they were 100, and had NO PROBLEMS ever with lung cancer, or the Manuel Uribes of the world, who weigh in around 1,000 lbs, and have no high blood pressure, no high cholesterol, no triglycerides, and no diabetes. Healthy eating and exercising can benefit EVERYONE, and they are ways to help us EXTEND our chances for good, overall health, and have more energy for life... but they are not a passport to a disease free life.  I recall a next door neighbor, from my childhood... Jogged every day, very fit, and thin... Died at 42, from a sudden heart attack. No family history.  His dad, by contrast, smoked like a chimney ALL HIS LIFE and didnt die until well into his old age, when he actually presented complications. Diet and exercise will NOT 100% prevent anyone from getting Type 2 Diabetes, nor should it be presented that way.  Am I saying we should push the lottery of life? NO.  No way in hell.  But what I AM saying is that telling people they could have avoided giving themselves a disease is a.) Unhelpful, and b.) Not the complete picture of things, and probably, very untruthful.  
2. Awareness focuses on telling people THEY need to take action in getting tested, and finding out that they have this chronic condition. Now, dont get me wrong... I agree with this.  I agree that we need to take action, and we need to get a hold of our health... but I agree with it, mostly because doctors are NOT doing their part.  And this is where awareness fails.  Awareness should not rely on going around, scaring people, telling them they need to get tested. (Many people wont... they dont want to know... hey, its scary... I dont blame them!) Awareness should rely on empowering doctors, urging them to continuously educate themselves about Diabetes, and giving them the tools to help, and empower persons with Diabetes, in a welcoming, and nonjudgmental environment. If this is such a dangerous disease, why arent doctors being sent to more intensive training to learn, and deal with this condition? Why is my PCP so ignorant that she had to go get herself on the ADA website to find out information to "give me," on what to do?! I can do that myself, thank you very much! (And it sure as hell WONT be from the ADA site!) If this is such a dangerous disease, why is a fasting blood glucose, or even an OGTT for those at high risk, NOT part of an annual physical? Why do people need to know that they need that, in order to demand it? Why cant a doctor know? 
Whats worse is HOW a diabetes diagnosis just keeps getting delayed, and delayed because of old, and tacky, ADA guidelines. Patients are not given proper follow up testing, told they have "pre-diabetes," not told they need to make any changes, not erred to any certified diabetes educators, or registered dietitians, and not given tools to monitor their condition.  In short, they are told they have NOTHING to worry about.  To just lose some weight, and they will be fine.  Most of these people are ALREADY diabetic, and dont know it.  By the time the average person gets diagnosed with "Pre-Diabetes," theyve already reached a 40% loss in beta cell function. (http://diabetes.diabetesjournals.org/content/52/1/102.full) By the time they are diagnosed with Type 2, an 80% loss in beta cell function. (http://www.dlife.com/diabetes/type-2/diabetes-causes/garnero_0608)
3. Awareness focuses mainly on telling people with Type 2 Diabetes that they need to take care of themselves, and they need to test.  I couldnt agree more! *clap* *clap* This is the truest thing that anyone can say about Diabetes (of any type), really.  It might seem hard to imagine that I, or anyone else, would have a problem with this... what could possibly be wrong? Well, the problem is similar to telling your spouse they need to go do the grocery shopping (for the week), and giving them only $20 to do it with. Huh? Ill spell it out for you... :)  Insurance companies will NOT HELP people with Type 2 Diabetes; they are of the view, and the assumption that because most of us will not immediately die from high blood sugar, that we do not need to test as often. This means that if you have "Pre-Diabetes," you are likely to be given 0-1 test strips (a day!) to test with; if you have Type 2 (anywhere from 2-4), depending on what medications you use... with 1 generally used for those not on medications, and 4 being used for those on insulin.  If you are a newly diagnosed person with diabetes who does NOT know how their diet affects them, 1 strip isnt going to be of much help.  Much less 0. You have to know at least two parts of a mathematical equation, to be able to come up with a conclusion of some sort (ie, because my fasting blood glucose before a meal was X, and my postprandial was Y, then I know the amount of carbohydrates I had raised me Z glucose points.) But if you only have X, or Y, by themselves, that doesnt tell you much of anything.  And if you have nothing, youre pretty much going on exactly that... nothing. Almost every informational pamphlet out there, on Type 2 Diabetes, urges people to test before and after every meal, at rising, before going to bed, and before or during exercise, and at times of illness.  Now, do the math with me... how many strips does that add to? ... Yeah, a heck of a lot more than 1. Insurance companies claim that the costs of covering these strips is too much, yet... they do not factor in the costs of complications from poorly controlled blood glucose, nor do they seem to want to listen to how much money they could actually save if they actually taught people how to monitor their blood glucose and make meal decisions based on their numbers.
4. Awareness focuses on telling people they need to go talk to a Certified Diabetes Educator, Registered Dietitian, or Endocrinologist.  Yet, for a Type 2 Diabetic, insurance will SELDOM cover these specialists as they deem them unnecessary, and unjustifiable.  Diabetics are left to the care of very many ignorant PCPs, APs, and even RNs, or LNs, with their OWN ideas of what diabetes is.  Whats worse, is that NONE of these people seem to understand that Type 2 Diabetes is a progressive illness in which our bodies will not be able to metabolize carbohydrates properly... We are ALL different in our progression (and the damage in our systems), and telling a person to eat X amount of carbohydrates, at meal times, without instead... letting them learn what number is appropriate for them based on their glucose responses, their overall health feeling, and appropriate medication levels, is setting up MANY people for failure.  This is where the conspiracy theorist in many wakes up, because keeping people on so many carbohydrates with the excuse of "your brain will starve," keeps a lot of diabetics on MANY medications, some very dangerous, bringing about many unnecessary complications at an early period of progression.  Whats worse is that doctors not up to par with the latest in medical research will keep Type 2 Diabetics from access to insulin, sometimes until terrible, and unnecessary damage has occurred, from the complications of high blood glucose. Studies have shown that early insulin intervention is NECESSARY in Type 2 Diabetics. (http://clinical.diabetesjournals.org/content/27/2/60.full)  
5. Awareness focuses on telling Diabetics they need to keep their blood glucose numbers steady. Yet another gem of wisdom here.  I couldnt agree more, again, frankly... "But why is this so wrong, Liz? You must be off your rocker..."  The problem here is that Diabetes advisory organizations do NOT agree on blood glucose target goals, and often use poorly done studies (like the ACCORD study) to justify that diabetics (of all types, without respect to good health), stick to higher blood glucose numbers that can lead to complications later down the road.  Frankly, the American Diabetes Association is the ONLY organization recommending such high blood glucose goals as being at 180 or lower, 2 hours after a meal! Everyone else recommends around 140 mg/dL.  Why are we relying on these people, and not on the American Association of Clinical Endocrinologists, for example? I cant tell you the answer to that one... I can surmise they channel most of the research funding money, and think many of us cant do it. We cant and wont take care of ourselves, to better levels... Its too hard.  While some, may, indeed have health challenges keeping them from tighter goals, I do think those are personal decisions that need to be made with ones medical team, and not as general blanket goals espoused by guideline organizations.  Again, the conspiracy theorist in me, would tell you that because the ADA has a LOT of conflicts of interest with big pharma (and this was documented through a recent Mount Sinai research study), then they get some type of financial, monetary kick back from many of us being on pills.   (http://www.ama-assn.org/amednews/2011/10/24/prsc1025.htm) 
6. By far... what I dislike the most about Type 2 Diabetes, in regard to Diabetes Awareness  Month... is that they NEVER talk about finding a cure.  This hurts me deeply... because NO, diet and exercise wont make this thing go away, and for many of us... like my father... they are not even guarantees of having good control. My father lost his battle to Type 2 Diabetes on 05/05/2003. During the last few years of his life, he endured kidney failure (we dialysed him at home), blindness, neuropathy (both peripheral and autonomic), coronary heart disease, dementia, stroke, and gangrene. He passed away at the operating table, from respiratory failure, as he was awaiting surgery for a leg amputation.  His diabetes simply took a very brittle turn for the worst... Ive never known someone that took better care of themselves.... He was President of the Puerto Rican Olympic Cycling Federation and Skating Federations, as well as President of the Puerto Rican BMX Associations.  A coach, and a huge supporter of active youth, and athletics.  He got me my first BMX bike when I was just 5 years old. 

My father, near diagnosis.

My father, 10+ years after diagnosis