From a public health perspective, there was more at stake than personal feelings about Paula Deen or her motivations for waiting to disclose her condition until her endorsement went public. Leah Roman, whose public health expertise includes a focus on public health and pop culture, considers the situation a lost opportunity for a teachable moment, and such moments, she says, help us “identify a time when our audiences will be more open to prevention, education, and intervention because they see its relevance to their lives. Often the identification and sustainability of teachable moments are supported by media reports on the health and lives of celebrities.”2 What’s more, linking Deen’s type 2 diabetes exclusively to her diet is what Roman calls a huge simplification of health behavior, which includes environment, socioeconomic status, genetics, and many other factors. “Sometimes that gets left out in the media and in conversation when there is a lot of blaming,” Roman says.
“The problem is this: we humans tend to live in shorthand,” says Caroline Sheehan. Sheehan is a patient advocate at a federally qualified center that serves low-income patients, and in her personal life she is active in ACT1 Diabetes, a nonprofit diabetes advocacy and support group. She points to the work of Nobel Prize winners Daniel Kahneman and Amos Tversky and other psychologists who have researched heuristics, which are the frameworks we use to make decisions. “In a sense, they’re the only way we can take action and move forward in daily life instead of analyzing every aspect, opinion, and possibility before making a judgment. But in matters of health, heuristics often backfire. It’s much easier to assign blame to individuals for their illness, rather than consider the myriad factors that influence it,” she says.
When it comes to, say, an obese female patient with type 2 diabetes, too often the immediate assumption is that patient is lazy. But Sheehan points out another framework: What if the woman works two sedentary jobs to support her children and doesn’t have any time to exercise or sleep properly? What if her limited food budget means she eats mainly what her kids like to eat, or the fact that her health insurance only covers half her diabetes supplies means she rations her test strips and doesn’t test her blood sugar as often as she should? That plot line is a lot more complicated and requires more consideration, even compassion. Yet it isn’t the obvious story, the one we are quick to believe or parse out.
“Much too often, I see a parent of a child with type 1 diabetes lashing out against a news story that does not differentiate between type 1 and type 2 in regards to a new treatment or new research, or yet another story on ever-increasing obesity numbers in Western society. It often leads to them perpetuating myths about type 2 diabetes,” says Rachel Foster, a diabetes advocate and active blogger who has type 2 diabetes. “For example, ‘what my child eats did not contribute to their diagnosis, unlike someone with type 2 diabetes.’ This is not necessarily true, as type 2 diabetes is often genetically influenced. The perception that anyone eats their way to diabetes should be avoided.”
I see her point. I know type 1 diabetics who are overweight and type 2 diabetics who are rail-thin. I know people who developed diabetes as a result of taking steroids to treat other life-threatening diseases, and I know plenty of people who are overweight and don’t exercise who breeze through their cardiovascular and glucose tests without a glitch. As a younger patient with type 2 diabetes—she was diagnosed before the age of thirty—Foster lives with many assumptions about her lifestyle, despite that fact that they no longer hold true. Admittedly, she made some poor choices when it came to nutrition and exercise during her twenties, but she acknowledges a strong genetic tendency toward the disease as well. For years now she has maintained a healthy diet and exercises regularly each week, in addition to taking a medication to help manage her disease. To her, the deep divide only serves to distract patients and advocates from the common focal points the two diseases share.
“We forget that both type 1 and type 2 diabetes may lead to the same complications involving the eyes, kidneys, heart, and extremities because the ways in which we came to live with diabetes are different. The focus should be on preventing complications instead of constantly speaking of different names for similar disease processes,” she says. “We also use the same blood glucose meters—and in some cases, the same insulin pumps and continuous glucose monitoring devices—and we should all be concerned with the accuracy and safety of such devices.” In her words are echoes from across the disease spectrum, from parents of children with autism to patients with autoimmune diseases to cancer advocates. At some point, we need to put aside different definitions, or ideas about causation, and make sure that patients living with diseases right now have access to the medications, devices, and services they need for the best health outcomes.
Is that time now?
Premodern times focused on moralistic attitudes about character and illness, and the twentieth century was the age of the biomedical model and discovery, which makes me wonder how the twenty-first century will play out in terms of chronic illness. With 164 million Americans expected to experience chronic illness by 2025 alone, it will undoubtedly be a century of chronic illness.3 Perhaps the more pertinent question is, under which theme will we characterize how we respond to chronic conditions? Will patients with chronic illness mobilize the way we saw so many groups do in the twentieth century, and will the Internet be their vehicle? Will science yet again tempt us with the answers to the mysteries of illness, as it indicates it might with personalized medicine, genetic testing, and other innovations? If we focus even more on the environment and lifestyle, what are we leaving out?
Using Roy Porter’s assertion that disease is no less a social development than the treatments that combat it, we can see quite clearly how changes in the way society works, eats, lives, and moves are connected to our experience of illness.4 The Industrial Revolution changed the way we lived and worked and, in turn, changed the ways in which we became sick with communicable disease. The shift to a more digital workplace means an increasing gap in socioeconomic status, profound differences in the way we consume goods and services, differences in lifestyle and activity, and differences in quality of and access to health care. If the current state of illness in our country is any indication, prosperity and progress, it seems, come with a cost.5
Chronic Disease and Prevention: Stigma and the Cult of Responsibility
As we saw with the type 1–type 2 diabetes scenario, the distinction between conditions that are largely preventable through changes in behavior and those conditions for which prevention means slowing down disease progression is an important one. We can point to diet and exercise regimens as some antidotes for lifestyle-acquired illnesses, but the same approach does not work for, say, the patient with cystic fibrosis (CF), or myriad other autoimmune, rare, or genetic diseases. Certainly there are things these patients can do to improve their health status and minimize long-term complications. The CF patient can stick to daily chest physiotherapy to help clear secretions, can diligently take his or her inhalers, nebulizer treatments, antibiotics, and enzyme supplements to help manage infections and maintain nutrition. These steps will hopefully slow down disease progression, but preventing disease progression is not preventing disease itself.
Advancements in treating and preventing infectious disease and other illnesses contribute to our living long enough to acquire chronic conditions, but the statistics reveal that many of today’s pressing health issues—obesity, hypertension, heart disease—are related to the choices we make. Alcohol and smoking, diets high in saturated fats, and lack of physical activity, the “hallmarks of life in the West,” have a significant role in the development of ongoing health conditions.6 Heart disease and type 2 diabetes are not unique to our day and age, but the number of people living with them and the demographics of that patient population have changed. Now, heart disease is the leading cause of death for both men and women in our country,7 and 23.6 million people live with diabetes (the majority of whom have type 2 diabetes). Another 57 million peop
le teeter on the edge of the disease and are classified as having “pre-diabetes.”8 Almost 60 million Americans are obese, and more than 108 million adults are either obese or overweight, or in other words, about three out of every five Americans carry excess (and unhealthy) weight on their frames.9
All the talk about sitting in front of computers, driving instead of walking, and watching television instead of moving around are not just generalizations. Thirty-seven percent of Americans admit they are not physically active, and only three out of ten American adults get the recommended amount of regular physical activity (thirty minutes or more, at least five times a week). Regular, moderate exercise can substantially decrease the risk of developing heart disease, type 2 diabetes, and certain cancers, can help keep cholesterol and blood pressure lower, and can lessen symptoms of anxiety and depression.10
By and large, our children are less active than even one previous generation were, too. Children need even more regular physical activity than adults do (sixty minutes a day). For some context, one-quarter of American children watch at least four hours of television per day, and only another 25 percent of American teens reported getting moderate exercise each week.11 As childhood and teen obesity rises, more children are receiving diagnoses of type 2 diabetes, setting them up for a lifetime of possible complications.12 More than 10 percent of young children (ages two to five) are classified as overweight, a proportion that has doubled since 1980 (the year I was born), and research shows that from 1999 to 2002, 16 percent of children between ages six and nineteen were overweight, a proportion that has tripled since 1980.13 By 2008, more than one third of children and adolescents were overweight or obese.14 A recent analysis in the Lancet found that if current trends continue, by the year 2030, nearly half of all Americans will be classified as obese. The population of today’s obese children who will grow into adults with weight problems is part of this projection.15
With statistics like those, it is clear why health care professionals and public health experts are worried. Consider gout, an inflammatory disease that causes intense pain in toes and other joints. Gout was once called the “disease of kings” because it afflicted the wealthy, who could afford rich indulgent foods and large quantities of alcohol.16 Now, as more Americans grow older, put on weight, and remain sedentary, gout has become a middle-class affliction. An estimated two to six million Americans now suffer from gout, and the New York Times reports that the number of cases is thought to have doubled in the past three decades.17
We have come a long way from the repressive cancer personality mentality and the dreaded “C” word so vilified by Susan Sontag, but with our knowledge inevitably comes more responsibility. We know that smoking can cause lung cancer and tanning can cause skin cancer, but the association between lifestyle choices and cancer goes beyond that. Experts believe a full 50 to 75 percent of cancers are associated with lifestyle and behavior; 25 to 30 percent of the major cancers that affect U.S. patients may be the result of poor diet and inactivity.18 Cancer consists of thousands of diseases, and prevention and risk factors vary among specific diagnoses. This isn’t to say that genetics, environment, and other variables aren’t at play in the manifestation of cancer. Of course they are, and to assume otherwise is a damaging stance. People with the same basic diet and level of activity can have completely different health outcomes: one may develop diabetes or heart disease or a form of cancer, while the other may encounter only minor health problems. However, educating people about the many types of cancer that have known risk factors is a public health priority.
You can’t have a conversation about chronic disease, lifestyle, and responsibility without mentioning the big “P” word: Prevention. In fact, it is one of the most oft-referenced terms in the discourse, from governmental and political writings to public policy. Looking at the big-picture statistics, there is good reason for such focus: each year, seven out of every ten deaths are the result of chronic disease, and five chronic diseases (heart disease, cancer, stroke, diabetes, and chronic obstructive pulmonary disease) with lifestyle associations cause two-thirds of deaths each year. Of the 133 million Americans who live with chronic disease, many have more than just one condition, and collectively, 75 percent of health care spending (an estimated $1 trillion in 2005, for example) is attributable to chronic disease.19 Unless there is a major system change, the Centers for Medicare and Medicaid estimate that health care spending will double over the course of the next decade, costing us a predicted $4.3 trillion in the year 2017.20
The message to change our lifestyle is pervasive, even if the change that follows it is nascent. From First Lady Michelle Obama’s “Let’s Move!” initiative—one goal of which is to fight childhood obesity—to wellness initiatives and incentives for weight loss sponsored by corporations and by health insurance companies, healthy living and healthy eating are constant cultural conversations. Many health insurance plans now subsidize gym memberships, and coverage of services like nutrition consulting is more common. It is a start, but the scope is much bigger. Preventive measures rest on the assumption that patients have access to adequate and appropriate health care, the resources and knowledge to make changes in diet, opportunities for safe physical activity, and environments that support wellness in all its forms. We aren’t helped by the increased portion sizes in restaurants and stores, by the marketing gimmicks and flashy advertising of unhealthy foods, particularly toward children, and by the abundance of processed, nutritionally depleted prepared foods we consume.
In a much different way, our consumer culture has introduced an intellectual shift in regard to nutrition. Best-selling books like Michael Pollan’s The Omnivore’s Dilemma and In Defense of Food urge us to abandon processed food substitutes in favor of the real thing—whole, fresh foods—telling us that doing so will benefit our health as well as the environment. Many processed foods have ingredient lists that are several lines long, and a common frame of reference is to point to our grandparents’ generation, before relentless marketing campaigns and “food products” replaced freshly cooked meals. The Center for Science in the Public Interest has a comprehensive glossary of food additives it calls “Chemical Cuisine.” The list of additives marked in red labeled “Avoid” contains almost two dozen additives, including partially hydrogenated vegetable oil, common in processed foods, and the potentially carcinogenic sodium nitrate and sodium nitrite, which are often used in processed meats—foods that are also often high in saturated fats and sodium.21
Pollan’s mantra that we should “Eat food. Not too much. Mostly plants,” quickly made it from the New York Times to food and health bloggers’ posts across the Internet.22 In 2009, New York Times food writer Mark Bittman published his “vegan before six P.M.” strategy, and the value of a diet lower in animal fats and higher in plant-based proteins was something more than a doctor’s suggestion—it was almost trendy.23 The rise of the “foodie culture” promulgated by shows like The Next Food Network Star, Iron Chef America, Top Chef, and many more elevated cooking—and therefore eating—with the general public. It is now fashionable to make stock from scratch, to linger over red wine reductions, and to experiment with fresh vegetables. Farmers’ markets are growing in popularity, from bustling urban downtowns to leafy exurbs, and more customers are starting to branch out from local produce and fruits to locally raised, hormone-free meats. These developments are promising, but only as far as their reach extends. If you have the means and awareness to buy locally produced goods at farmers’ markets, or the time and resources to make more food from scratch and cut down on processed items, hopefully you will reap the health benefits. If we think back to Caroline Sheehan’s example of the overworked, fiscally strapped type 2 diabetic trying to raise a family and keep her disease under control, we begin to see how flimsy the safety net of the “right choices” can be.
Prevention is tied to empowerment—giving people the tools they need to manage their health. Health literacy, an understanding of appropriate technology, access t
o affordable medications, knowledge and resources to prepare healthful foods, and regular opportunities for exercise are paramount. “We can’t goad a person into willingness to take care of themselves; the desire to manage their illness is fundamental and comes from them alone. But beyond that, it becomes a two-pronged effort of individual responsibility and community empowerment through the tools provided,” Sheehan says.
Of course, knowledge does not mean action. We might know about calories, nicotine, or the ill health effects of sugary beverages and processed foods, yet we still smoke, or eat too much of the wrong foods. Likewise, we might know the means of transmission of HIV, for example, and what we can do to protect ourselves. AIDS advocate Susan Tannehill said bluntly, “You can not get HIV,” and yet millions of people continue to get infected. In 2006, the Centers for Disease Control reported 56,300 people were newly infected with HIV.24 Similarly, the patient with multiple sclerosis may know full well that extreme heat or cold exacerbates his or her symptoms but may choose to overdo it in the heat anyway; the patient with celiac disease may know that ingesting even a small amount of gluten could trigger symptoms but may have “just a bite” of bread regardless. And of course implicit in these examples is the assumption that the patient does know these things, just like we assume the type 2 diabetic knows enough about the glycemic index to make smart food choices, or the asthmatic understands that environmental pollutants and allergies could be significant triggers for his or her congestion.
In the Kingdom of the Sick: A Social History of Chronic Illness in America Page 22