Thursday, April 10, 2008

Perceptions vs. Reality

Sometimes, there are works that stand the test of time better than others. In the case of diabetes writing, Deb Butterfield, author of "Showdown With Diabetes" wrote the following article in 1992, yet to me, it feels as if her words were never more true than they are today. What do you think?

Perceptions vs. Reality
By Deb Butterfield
Original URL for this article:
http://www.insulinfreetimes.org/itimesv600.htm

Perceptions are often quite different from reality, yet perceptions wield enormous power. Diabetes is widely perceived to be a manageable condition. Most people believe that diabetics will live a full and normal life if they follow the rules of diabetes management. Yet the reality is that diabetes kills one American every three minutes, and every three minutes, four more are diagnosed. Diabetes is the leading cause of blindness, amputation, and kidney failure. Sixteen million people in the United States have diabetes and 35% of them will suffer from kidney failure at which point the chance of survival is less than that of surviving ovarian cancer. The chasm of silence and misinformation between the reality and perceptions of diabetes goes a long way to explaining why diabetes has not received its share of government research funding, nor the public outcry to find a cure.

Two years ago [in 1990], the National Diabetes Education Program (NDEP) initiated a multi-media blitz that announced, "Control Your Diabetes. For Life." Just like that. It's up to you. It's your disease. If you control it, you'll have a life, if you don't you won't. According to Dr. Phillip Gorden, the then director of the National Institutes of Diabetes and Digestive, and Kidney Diseases, the purpose of the campaign is to, "get the message out that diabetes is serious, common, costly, and controllable." Via radio, television and print, our neighbors, coworkers, friends, and relatives learned that diabetes is controllable. The theme reinforced the belief that diabetic disabilities and their associated economic costs are caused by diabetics — not by diabetes.

Now think for a moment what would happen if the campaign had announced, "Diabetes disables and kills. Only a cure can stop the suffering," with pictures of a little boy leading his blind mother around a grocery store and a voice-over explaining that diabetes is suffering. This campaign would create a fundamental shift in the way diabetes is perceived. The public would see diabetes as the enemy, as we see cancer and AIDS as enemies. They would worry that if it isn't cured, it could happen to them, or to their children. A "Diabetes Disables and Kills" campaign could change the face of the disease by removing the smile that has so long been attached to it in product advertising and brochures in doctors' offices and pharmacies. Perhaps public outrage that there is no cure yet would create political pressure to increase funding for cure-focused diabetes research.

Many parents of diabetic children and people who have diabetes would be outraged and shocked by such a campaign, in part because we too believe, or want to believe, that if we follow the practices of good control, we are guaranteed a life free of diabetic complications. Not only do we want to believe that; we have been taught to believe that. Just last week at a small "diabetes family night," three of the five mothers of diabetic children there said that they had been told not to worry too much about their children's blood sugars, that children are resilient to complications. No doubt, the doctors, with good intentions, are trying to ease the worries of the mothers and children with their platitudes. Using reassuring voices and sweet smiles, nurses convey the message that if you do as you're told, then everything will be okay – just as in the NDEP campaign, they are telling their patients that diabetes is controllable, and if they control it, they will be fine. But the truth is that no study, not even the Diabetes Control and Complications Trial, has ever been able to show that diabetes management can prevent complications. Of course, in the absence of a cure, diabetes management is important to slow the progression and delay the onset of complications as much as possible, but we should not delude the public, or ourselves, that management is sufficient. At best, it is an inadequate treatment until a cure is found.

Diabetes is big business with powerful economic, social and political forces opening and closing doors to our treatments and cures. Billions of dollars are made from selling products to the diabetic community. Developing a cure costs money, and until there is a cure, there is no product to market. There is nothing to sell. At the large diabetes conferences, healthcare professionals are inundated with information about more accurate and simpler blood glucose monitors and insulin delivery systems, but the advocates for curing diabetes, and scientific advances to that end are woefully underrepresented.

Unfortunately, without the attention-grabbing gimmicks of the companies selling diabetes management products, the message about curing diabetes gets lost and healthcare workers return home, telling their diabetic patients only about all the new technology that can help them manage their condition. This year [1992] at the American Diabetes Association convention in San Antonio, non-profit organizations are not even permitted to be on the convention hall floor, but have been moved to another floor to make room for the for-profit companies that will pay more for their display booths.

Is diabetes as life threatening as cancer or AIDS? The answer is an unequivocal “yes,” in fact, more people die every year from diabetes than from breast cancer and AIDS combined, but you would never know that from the level of government spending on research for each of the diseases. Research funding is highly subject to how effectively advocates lobby for their particular disease. Take, for example, funding for prostate versus breast cancer. Although they both cause about the same number of deaths per year, funding for breast cancer is five times higher than for prostate cancer. According to Gary Becker, the 1992 Nobel Laureate, breast cancer research is “so much better funded partly because sufferers are better organized for political activity. Men have tended to keep quiet about their prostate cancers.” Becker notes that AIDS research receives four times the funding of breast cancer, and more than 20 times the funds of prostate cancer. “The political effectiveness of AIDS activists surely helps explain why a much larger chunk of the federal budget is allocated to AIDS research than to other terrible and painful ailments,” Becker writes.

The government spends $1,700 on AIDS research for each person with AIDS, but less than $20 on diabetes research for each person with diabetes. Advocates for AIDS and cancer encourage financial and political support with well-publicized reports of each research success and imminent breakthrough in treatments for their diseases, yet have remained staunchly focused on cures. In contrast, we send mixed messages about diabetes. In an effort to encourage optimism and confidence diabetes magazines and educational materials show images of active, healthy people “managing their condition” with a “no problem” attitude. Pharmaceutical companies use images and slogans of smiling diabetic people holding syringes and blood glucose monitoring equipment -- the symbols of diabetes. But the disease itself is not revealed.

The public perception of diabetes is influenced by our personal testimonies, and we have portrayed a disease that is no more than a minor inconvenience. Diabetes has long been a disease of blame and shame with accusations of non-compliance, mismanagement, and "cheating" on diets. Diabetic complications have served as a line of demarcation between those who are proud to speak out and those who hide. People who are doing well with diabetes, who are congratulated and respected for their ability to control their disease, become the faces that peer out of the pages of articles, advertisements and diabetes education brochures.

By showing the world only the happy face, and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes. For policy makers, philanthropists, employers, and the public to feel compelled to cure diabetes they need to understand that diabetes is:


  • costly for society and that those costs are rising

  • pervasive and the incidence is accelerating

  • soul-destroying and there is still no cure

  • and, above all, that diabetes is curable


In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world's oldest, deadliest, and most pervasive diseases.

10 comments:

Anonymous said...

Scott—

Having read Deb Butterfield’s book, and knowing the consternation she has experienced over the years living with diabetes, I can only re-emphasize the fact that these words—written 15 years ago—are truer today than they were then.

The last endo that I fired was tired of hearing me tell him the care he was offering was inadequate. He finally blurted out in disgust, “You have to understand, as a diabetic, this is a malignant disease.” That was a mouthful to hear coming from your caregiver, who in actuality lumped diabetes in the same group as cancer—indicating the patient should expect (and accept) the worst.

I’ve always felt that it was self-righteous, selfish and embarrassing to be put in a position where in order to get funding for a cure, your disease has to be considered worse than someone else’s disease. I think somewhere in our Constitution there was a failure to mention that all patients should have equal opportunity to receive quality care and opportunity for cure advancement.

I would reiterate the fact that less than one percent of all people who contract Type 1 diabetes ever reach their 50-year survival anniversary. Another way to express this is over 99% will get blamed for not taking care of themselves or living up to their doctor’s expectations.

ARE WE ALL A BUNCH OF MUSHROOMS? Do we—by our silence--CHOOSE to be kept in the dark and fed a bunch of (corporate/medical) bullshit.

--Brent

Jenny said...

Don't forget that since 1992 the ADA has campaigned tirelessly against letting patients with diabetes know that it is carbohydrates that raise blood sugar and that the key to better control is cutting back on carbs to where you can match them to insulin without making a hypo almost automatic if you don't calculate carbs properly.

The ADA "tight control" web page for Type 1s still does not mention the word "carbohydrate."

I hear on a daily basis from people with Type 2 whose doctors tell them they are overreacting when they demand help in getting their A1c below 7.2%. Some doctors refuse to give any therapy to a Type 2 with that A1c because they insist it isn't necessary thanks to the ADA's refusal to educate the public about how Type 2s get many more complications at that a1c level than do Type 1s.

I hear from patients with Type 2 whose doctors put them on insulin at doses that are literally 1/2 of what they need and because of fear of hypo leave them with fasting blood sugars over 200 mg/dl.

A cure would be nice. But we could lower the incidence of complications enormously just by educating the family doctors who treat most Type 2s about what good control REALLY means.

And teaching them that lowering carbs is step one. Tragically, most doctors still believe that fat is what kills people with diabetes, not carbs. And they still recommend the low fat diet that has been proven ineffective for anything but worsening health.

Scott said...

Brent and Jenny,

Interestingly enough is the fact that there IS a common thread between both of your responses, and that is the fact that diabetes is not viewed as a disease, but a business! The ADA is perhaps most guilty of this, but they are hardly the only ones.

The example I like to cite because its so blatant is the fact that Log Cabin syrup has the ADA logo proudly displayed on it. Now, it may be a sugar-free version of the regular product, but consider what it is most commonly used with: waffles and pancakes, which are as close to pure carbs (refined white flour is the core ingredient in both), and somehow no one questions whether this "sponsorship" is appropriate or sends the right message? Patients get that, but an association of doctors and nurse educators should be ashamed of themselves!

The bottom line is that diabetes and the patients who have it are sometimes lost in the evaluation of any of these things, whether its new drugs or food endorsements, one has to wonder where the patient's perspective is evaluated? Today, we're viewed as cash machines, not people, and until that perception changes, we're likely to see more of the same!

Regards,
Scott

Anonymous said...

Scott & Jenny—

We are in agreement about what the pharmaco/medico community is doing to ALL diabetics. Like you, I know that the various forms of carbohydrate will raise my bG disproportionately to the amount exogenous insulin available. However, have you ever thought about the possibility that the insulin cartel, our doctors, and even our ‘charities’ recognize something which most patients do not. Today’s fast-acting, sharply-peaked insulins ARE an accident waiting to happen—figuratively and literally. Insulin, in Type 1’s, is calculated on the number of carbs eaten (or to be eaten) in the next one-two hours. For most active T1’s, an equivalent amount of calories from protein or fat or complex carbs may not be sufficient to cover a peak of insulin. Combine that with overlapping, intermediate/long-lasting insulin and most MD’s are at a point where they recommend a patient eat readily-available carbs in order to protect THEM (the doctors/cartel) from liability.

Jenny, I don’t know enough about T2 diabetes, but I do have several friends that are, or were, Type 2. When their doctors started mixing pills/one to two types of insulin/Byetta and, of course, other criteria to keep blood sugars within a normal range, they ALL started running into serious low bG’s. A good diet was not sufficient to keep these ‘lows’ from occurring. Carbs, then, were recommended to ‘save them’ from all their medications.

Today’s insulins are so fast-acting and peaky that doctors recommend high-carb diets to protect the patient from the drug. At the same time, the doctor/insulin cartel are more than happy to promote high carb diets because it sells more insulin.

--Brent

Penny said...

Scott,

I just wanted to say this is a great post.

I have often said that as long as we act like diabetes is no big deal then it will continue to get treated like no big deal.

My son was diagnosed at 3. Without a cure the odds are stacked against him no matter how fiercly he cares for his disease. Chances are that he will die from this disease. Tears are streaming down my face as I type that.

Sugar coating the facts does not help anyone. We are lying to the public and most importantly we are lying to ourselves.

Anonymous said...

Scott--

The above graphic is POWERFUL. Each diabetic who is unwilling to sit back and accept whatever is pushed at them as the latest and greatest treatment or accept that "numbers" used to judge his/her success are control mechanisms for their caregivers SHOULD present his/her physician with a copy. Diabetes DEMANDS physician-patient partnership; and if the partner isn't part of the solution . . . he is part of the problem.

Thanks for the graphic.

Melody

honeysweet.us said...

Awesome post. The graphics bring home the point. Thanks Scott.

k2 said...

Scott -

Great post!
Diabetes,both 1 and 2, are money makers to say the least.
Thanks for the info!
k2

Susana la Banana said...

Very powerful post. Thank you so much for writing this. It needs to be said. It needs to be heard.

Anonymous said...

I was watching a program the other day on D-channel this is a show dedicated to diabetics supposedly. Towards the end they had a parade of celebrities chanting test often test often people like Brett Michaels from Poison “now there is a poster boy for proper control” its things like this that piss me off. They don’t need to be chanting at me! I have enough motivation by simply wanting to live. They need to be chanting Find a cure!!! Find a cure!!!