2016 Presidential Address: Diabetes at 212°—Confronting the Invisible Disease
This address was delivered by Desmond Schatz, MD, President, Medicine & Science, of the American Diabetes Association (ADA), at the Association’s 76th Scientific Sessions in New Orleans, LA, on 12 June 2016. Dr. Schatz is Professor and Associate Chairman of Pediatrics, Medical Director of the University of Florida Diabetes Institute, and Director of the Clinical Research Center at the University of Florida, Gainesville, FL. A physician-scientist, he has been involved in type 1 diabetes research since the mid-1980s and has published over 300 articles and book chapters. Dr. Schatz’s research focuses on the prediction, natural history, genetics, immunopathogenesis, and prevention of type 1 diabetes, as well as the treatment of children and adolescents with type 1 diabetes. He is the principal investigator on several National Institutes of Health, JDRF, and other competitively funded grants. Dr. Schatz earned his medical degree from the University of the Witwatersrand School of Medicine in Johannesburg, South Africa, and completed his residency and fellowship at the University of Florida. He has been an ADA volunteer for over 30 years and has served on the Professional Practice Committee (twice), Scientific Sessions Meeting Planning Committee, Publications Policy Committee (Chair), Government Relations Committee, Youth Strategies Committee, and Board of Directors. A board-certified pediatric endocrinologist, Dr. Schatz is the 2016 recipient of the Banting Medal for Leadership and Service from the ADA for his outstanding commitment and contributions to the Association.
212° is not just a number. It is the boiling point of water. I think of 212°F as the point where water is no longer still but erupts with urgency. It is a point of transformation where matter dramatically changes form as the boiling water turns to steam. Steam can power a generator and create energy, and energy powers movement.
Diabetes is an epidemic that is spiraling out of control across the U.S. and around the world, and yet it remains largely invisible. I challenge everyone today to consider how together we can create a scalding sense of urgency—the type that is capable of achieving transformational change—to transition diabetes from an invisible disease to a highly visible crisis that threatens the very fabric and resources of our society. That would be diabetes at 212°!
In a preview to the 2015 American Diabetes Association’s (ADA) Scientific Sessions in Boston, MA—the 75th anniversary of the Association—I was startled by the headline in the Timmerman Report, “Cancer Is Hot, Diabetes Is Not: Watch for Drug Safety and Cost Debates at ADA” (1):
The Internet was crackling this week with stories of progress against a disease that kills lots of people, and costs society billions of dollars in lost productivity. That was cancer. Don’t expect such hopeful scientific narratives this weekend, as physicians gather in Boston to discuss another common scourge—diabetes. Compared with innovation in cancer, diabetes is dullsville.
Dullsville? Diabetes should be as hot a topic as any that exists in health care and that includes the Zika virus. This disparity partly influenced this presentation.
Almost 4 years ago, I was invited to speak at a diabetes outreach event before 100 enthusiastic children with type 1 diabetes and their parents. I was asked to talk about progress toward our understanding of the causes and the prospects for a cure. As I invariably do, I encouraged everyone in the audience to interrupt me anytime and ask any questions. About 10 min into the talk, little Katie’s hand shot up. Katie was 9 years old but wise beyond her years. She cut to the chase. Diagnosed with type 1 diabetes at the age of 14 months, she had lived with the disease for 8 years and was tired of having it. After an estimated 20,000 finger sticks, 8,000 injections, and 450 pump site changes, it is easy to understand Katie’s frustration. She wanted to know when she would be cured—after all, AIDS, hepatitis C, and some forms of childhood cancer could be cured! Were we not smart enough or working hard enough? Were we not spending enough money on it? Why did so few people really understand what she went through each and every day? In essence, Katie was asking, where was our sense of urgency?
I paused and reflected, and as I struggled to answer, I realized that we think we know a lot about diabetes, but there is a lot more we do not know. Despite the remarkable amount of intellect and knowledge at the Scientific Sessions, we unfortunately know less than we think.
To support the points made, Video 1 (professional.diabetes.org/NoMoreHiding) showcases one patient’s perspective and daily burden of managing diabetes that may not be understood or clearly visible to those around.
The lack of visibility also extends to the patient-doctor relationship. Figure 1, strikingly similar to the World Diabetes Day symbol, signifies the unity of the global diabetes community, with the exception of the tiny break in the blue circle representing the amount of time that a patient with diabetes spends discussing his or her condition with a medical professional in a year. The break accounts for less than 0.03% of the area—less than 150 min out of the 525,600 min in a year. The reality is that health care providers are largely invisible as the patients manage a very complex disease on their own.
How many patients with type 2 diabetes choose to be invisible largely because of their own sense of failure and the frustration they confront during an office visit, knowing their blood glucose is still poorly controlled, their weight has not changed, and little or no effort was made to diet or exercise? Most patients stop taking their medications as prescribed after 6–12 months, losing most of the clinical benefit. Blaming and stigma develop, and then so does a profound sense of worry and fear among many patients—patients who have seen relatives suffer frightening consequences of advanced disease, including premature mortality. It is easy to criticize and cajole these patients in hopes of improving their clinical profiles. But how often do health care providers actually take time to hear or learn about their burden and the real reasons why they cannot seem to control their diabetes?
I ask, do we have a sense of urgency to resolve their burdens and questions rather than constantly doling out the same advice with the same expectations and achieving the same lackluster results?
Unfortunately, diabetes remains invisible even to our own medical community as the diagnosis of both type 1 and type 2 diabetes does not come early enough or is still missed. A recent headline read, “Mom plans funeral for daughter days after being diagnosed with diabetes” (2). A Tennessee mother took a vacation to spend spring break with her children. When her 11-year-old daughter began having muscle spasms, she took her to the doctor where she was prescribed some medications and told to drink plenty of fluids. Two days later, the mother found her daughter unresponsive and rushed her to the hospital where she was diagnosed as having diabetic ketoacidosis with blood glucose measuring 1,600 mg/dL. Instead of a fun-filled spring break, this mother lived every parent’s nightmare. She planned a funeral for her precious child days after her daughter’s diagnosis of diabetes.
Sadly, this is not an aberration. Deaths from missed diagnosis of type 1 diabetes still occur. In a review of their data from Toronto, Canada, Bui et al. (3) showed that almost 20% of children present with diabetic ketoacidosis. In children aged <3 years, this number rises to 40%, and many had had a clinic visit the week before presentation. For type 2 diabetes, consistent and timely diagnosis remains elusive, with studies revealing on average a period of more than 6 years from actual onset to diagnosis (4).
I ask, do you have a sense of urgency to remove the invisibility of this disease among our colleagues in the medical community to stop the senseless deaths from diabetic ketoacidosis?
Diabetes is like a wildfire raging through this country and across the globe, but is anyone really paying attention? Every year, we hear similar statistics. Yet the disease and related skyrocketing health care costs seem invisible to the governments of the world.
The general public, too, remains in the dark about diabetes. A recent Harris Poll revealed that cancer and heart disease are perceived as far more serious than diabetes. The vast majority of the individuals polled feel that people with diabetes have themselves to blame and know very little about the disease (5). Consequently, many are far more likely to know their blood pressure and cholesterol than their blood glucose. This must change!
Diabetes is the epidemic of the 21st century. The eye-opening statistics on the prevalence of diabetes are not lacking; however, consider these numbers in relation to all the recent media reports about the Zika virus epidemic and the urgent concerns and visibility it has and then realize how downplayed diabetes is by comparison.
In the U.S., in the past 30 years, the incidence of diabetes has skyrocketed sixfold such that 30 million Americans are now affected. Ninety percent have type 2 diabetes, and almost 8 million do not even know that they have the disease. Further, only 10% of the 86 million people with prediabetes are aware of their condition.
Worldwide, the number has quadrupled since 1980; 415 million people are now affected. The disease is invisible to the 46% of adults who are undiagnosed and do not know they have the disease. A patient dies every 6 s from diabetes and its consequences. It is projected that by the year 2040, 1 in 10 people will be living with this disease, with health care expenditures over the next two decades expected to exceed $7 trillion. Already in the U.S., people with diabetes account for up to 1 in 5 health care dollars (6,7).
I ask, do we not have the sense of urgency to convince the public and our governments that there is a wildfire raging? Do we not have the wherewithal to mount the type of activism and advocacy for diabetes as has been done so well for HIV/AIDS?
A perfect storm is brewing. The prevalence of diabetes is climbing at a meteoric rate, and of those living with the disease, few are meeting targets. We know the association between control and complications. We also know the association between complications and costs, both human and financial.
The minority of patients with type 1 diabetes, both children and adults, are achieving targets. Recent data from the T1D Exchange (Fig. 2) have shown that less than one-fourth of those aged <18 years meet the ADA HbA1c target of <7.5% (58 mmol/mol), and the rate is even lower in teens and young adults. In adults, less than one-third achieve the target of <7.0% (53 mmol/mol). Despite the technological advances, there appears to be no improvement in the more recently enrolled cohorts (8).
Elliott Joslin was prophetic. Just 1 year after the discovery of insulin by Banting and Best, he wrote in his classic textbook (9):
Insulin is a remedy primarily for the wise and not for the foolish, be they patients or doctors. Everyone knows it requires brains to live long with diabetes, but to use insulin successfully requires more brains.
Herein, however, lies another of the most invisible aspects of diabetes. The human brain, unfortunately, does a poor job of thinking like a pancreas!
Much like type 1 diabetes, type 2 diabetes also presents management challenges. Data from the National Committee for Quality Assurance (Fig. 3) show that nearly 60% of patients with type 2 diabetes who have commercial insurance are not achieving the ADA HbA1c target. Even fewer patients with type 2 diabetes who have Medicaid are achieving control. There has been little change over the past decade despite the introduction of several new drug classes (10).
Adherence is clearly critical to optimize control and to decrease morbidity, mortality, and health care expenditures (Fig. 4). Farr et al. (11) compared adherence and persistence among more than 200,000 adults with type 2 diabetes initiating dipeptidyl peptidase 4 inhibitors, sulfonylureas, and thiazolidinediones over a period of 3 years. Medication adherence ranged from 34 to 47% at the time of the first-year follow-up, dropping to around 28–40% at the second-year follow-up (11,12).
Why don’t health care providers have a sense of urgency to help patients to close the gap between the current reality and optimal diabetes management? Why haven’t the psychosocial and behavioral aspects of the disease, which are so critical to better management, been addressed?
Bad news and controversy sell best, but there is some good news. We have come a long way as a result of the hard work and commitment of many in the medical community at large. Within the past 25 years, there have been significant advances in decreasing morbidity and mortality in those affected by diabetes. The hallmark Diabetes Control and Complications Trial (DCCT) and UK Prospective Diabetes Study (UKPDS) have shown that tight control reduces complications and heralded the era of intensive management.
At the population level, Gregg and colleagues (13) at the Centers for Disease Control and Prevention showed substantial achievements in reducing complications between 1990 and 2010 (Fig. 5). Rates of myocardial infarction, death from hyperglycemic complications, and end-stage renal disease declined by 68, 64, and 28%, respectively. Rates of stroke and amputations both fell by 52%. All-cause mortality declined by 23%, and among adults with diabetes, cardiovascular disease death rates declined by 40%.
As age-related mortality has declined, the net result is both good news and bad news. Analyses of nationally representative data from 1980 to 2012 (Fig. 6) suggest a doubling of the incidence and prevalence of diabetes from 1990 to 2006 and a plateau between 2008 and 2012, but with a continued increase in the incidence among Hispanic and black populations. Thus, decreased mortality leads to increasing diabetes prevalence and hence an increase in the overall number of years lived with diabetes and in predicted total number of complications (14).
There have been many great public health achievements since 1900 such as vaccination, control of infectious diseases, safer work places, safer food, healthier mothers and babies, family planning, motor vehicle safety, and recognition of tobacco use as a health hazard. It is important to realize the reason that diabetes, the new public health epidemic, is not receiving the same attention. Consider the lessons learned from the following health crises and how they may relate to the diabetes movement—the decline in deaths due to coronary artery disease and stroke, the fact that some cancers are curable, and the advancements in HIV prevention and treatment.
Let’s examine the impact of biomedical research on U.S. health. U.S. life expectancy has increased by 10 years over the past 50 years. Cardiovascular disease death rates have fallen by more than 70% in the last 60 years. Cancer death rates are now decreasing by 1–2% per year; each 1% drop is saving about $500 billion. Antiretroviral therapy has been the most globally impactful lifesaving development of medical research in the 21st century. There has been virtual eradication of mother-to-child HIV transmission, and HIV/AIDS therapies now enable people in their 20s to live a full life span (15,16).
Why has the decline in the incidence of HIV/AIDS been achieved, whereas the epidemic of diabetes remains unchecked? If we compare disease prevalence in the U.S., there are nearly 30 million people with diabetes, 14 million with cancer, and just more than 1 million with HIV/AIDS (Fig. 7). The analysis of the National Institutes of Health (NIH) dollars spent shows that diabetes funding pales in comparison with cancer and HIV/AIDS funding. A paltry $34.71 is spent compared with more than $2,500 per patient with HIV/AIDS (17–19).
What can the diabetes community learn from the HIV/AIDS movement? Its origins began with an army of advocates who turned up the heat and took HIV/AIDS to 212° (Fig. 8). They created a sense of urgency, demanded change, and achieved phenomenal results in a few decades. At times, they were confrontational in their demands and did what they deemed necessary to get the attention they deserved, but they were smart and very well prepared to go toe-to-toe with policymakers, scientists, and corporate executives. They did not “go quietly into the night”; instead, they were unwilling to accept stigma and blame, denial, ignorance, fear, or isolation. They fought with grassroots advocacy, enhanced self-image, access, voice, and readily measurable outcomes. And they won!
The HIV/AIDS community engaged in collaborative research efforts, data sharing, and out-of-the-box thinking that accelerated research and achieved short-term successes, which, in turn, led to substantially more research funding. This movement fundamentally changed the medical research paradigm. It changed how research is conducted, how drugs are approved, how data are shared, and how patients engage with all areas of the federal government as well as the private sector.
Diabetes, including prediabetes, potentially affects one of every three people in the U.S. How is this not an epidemic? That it is not dealt with with the urgency of a “crisis”? That it does not have a “war” called upon it by the leaders of the society in comparison with some other disease states?
We have seen tremendous advances, but we are not yet in a position to give Katie the ultimate answer that she is looking for. Technological innovations have led to the development of insulin pens and pumps, mealtime insulin administration, and continuous blood glucose monitoring en route soon to the development of an artificial pancreas. However, insulin is not a biological cure. Enhanced understanding of β-cell biology has led to replacement of β-cell function. This sets the stage for effective therapeutic progress, but as yet there is no cure. We now know that type 1 diabetes is a readily predictable immune-mediated disease, yet the disease cannot be prevented. Without prevention, there is unlikely to be a cure.
Whether myth or fact, there is a fascinating story about a 19th century science experiment. As the story goes, researchers found that when they put a frog in a pan of boiling water, the frog immediately leapt out. In contrast, when they placed a frog in cool water that was slowly heated, the frog just sat there not realizing it was being boiled to death.
The results of the experiment are a good metaphor for what is required for transformational change. The frog in cool water is analogous to complacency, which is the undoing of transformational change. In contrast, the frog put into boiling water has the urgent sense of impending doom and does something about it. However bold it may be, it acted!
The immediacy of the Zika virus has recently grabbed the public’s attention. Immediacy means urgency and crisis, which means proper attention, resourcing, and prioritization. Just 3 weeks prior to this lecture, the U.S. Senate approved a $1.1 billion compromise bill to combat Zika (20).
The Time Is NOW for Us to Take Diabetes to 212°
Diabetes is the “global warming” of health care—another calamity in the making that is being conspicuously ignored while HIV/AIDS, the Zika virus, and other infectious diseases and epidemics grab the spotlight.
Those who are and will be affected by this insidious, invisible disease have a right to demand a fierce urgency of NOW! We can do for patients with diabetes what has been done for those with HIV/AIDS.
Now Is the Time for Advocacy at 212°
We need an army of advocates to fight for substantially increased funding from both the public and the private sectors that is sustained and flexible so we can accelerate research. We must advocate for better and more affordable treatments for patients and better reimbursements for those who care for them.
We must also end discrimination in schools and places of work. The ADA continues to lead the way, but more must be done.
Now Is the Time for Education at 212°
We should demand more education and support. We should demand reimbursements for multidisciplinary teams including nutritionists, psychologists, certified diabetes educators, and other essential personnel.
Now is the time for an awareness campaign to transition this disease from invisible to visible to both the public and the medical community. Imagine a world where no more children die of diabetic ketoacidosis, where we remove the stigma and judgment from those with type 2 diabetes, and where we actually help them to get their HbA1c under long-term control!
Now Is the Time for More Research at 212°
We need to push that urgency button by asking the bigger, more personally confrontational questions. Why aren’t we further along? Why have we not yet found a cure? Is there something more we are not doing? We need to think outside the box. We need to share data and remove the barriers to collaboration, which has been shown to be the single biggest component of innovation. We need to ask, what have we done today and what will we do tomorrow to act, speak out, and demand action?
Will we be able to answer Katie’s questions in the next 3–5 years? To truly confront this invisible disease, we cannot be trapped by dogma, conventional wisdom, or the inertia of the status quo. Stand up. Speak up. Do not let the noise of others’ opinions drown out your own inner voice.
Florence Nightingale, a strong-willed nurse and advocate for her patients and her profession, wisely said, “I think one’s feelings waste themselves in words; they ought all to be distilled into actions which bring results” (21).
The work of the diabetes research and medical communities are more important than ever. For the waters of diabetes to reach boiling point at 212°, every molecule has to be engaged. Every molecule needs that fiery urgency that now is the time. The ADA Scientific Sessions offers a platform for uniting the collective voices of this community and creating a sense of urgency to confront and change the course of the diabetes epidemic. What we think or what we know or what we believe in the end is of little consequence. The only thing of consequence is what we do and what impact it has. Our profession is responsible for real action capable of turning the tide of this epidemic and finding a cure.
Acknowledgments. I thank my fellow principal officers Robin Richardson, Maggie Powers, and Lorrie Welker Liang who work so hard for the Association. The ADA staff led by Kevin L. Hagan are truly exceptional. All have a shared passion. I want to thank my clinical and scientific colleagues who are invariably constructive, inspiring, and even entertaining at times. I have always believed that achievement is less about talent than opportunity. I came to the University of Florida in the early 1980s and was fortunate to find myself in the presence of a rich environment dedicated to improving the lives of all people with type 1 diabetes. I have had wonderful mentors in Douglas J. Barrett, Arlan Rosenbloom, Janet Silverstein, Noel Maclaren, and Jay S. Skyler. For the past 30 years, my career has been closely intertwined with my friend and colleague Mark Atkinson. I am constantly inspired by my patients and my colleagues Michael Haller, Clayton E. Mathews, Clive H. Wasserfall, Martha Campbell-Thompson, William Winter, and Todd M. Brusko. I cannot thank Cynthia Ayris Kemp, Anastasia Albanese-O’Neill and Cassidy O’Neill, and Norma Kerr enough, as well as Matt Petersen, Robert E. Ratner, Richard J. Farber, Bruce Taylor, Bobbie Alexander, Greg Baird, John Griffin, and Kelly Close, among so many others, who have provided inspiration for the address.
The most important recognition must be reserved for my family. What is never invisible to me is the support of my wife Nadine, both in raising our family and throughout my career. I also thank my children Richard, Megan, and Ilyssa who felt the urgency to attend the meeting. They, like each and every one of my patients, are not only always supportive but are also a driving source of inspiration and wonder.
Duality of Interest. No potential conflicts of interest relevant to this article were reported.
For a webcast of the 2016 Presidential Address, please go to professional.diabetes.org/2016PresMS.
- © 2016 by the American Diabetes Association.
Readers may use this article as long as the work is properly cited, the use is educational and not for profit, and the work is not altered. More information is available at http://www.diabetesjournals.org/content/license.