PERCEPTIONS vs. REALITY
By Deb Butterfield
This article is available in Italian
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 percent 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, 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 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.
Excerpts borrowed from Showdown with Diabetes, published by W.W. Norton
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