3. Misunderstanding the African American Experience
4. Native Peoples and the Thrifty Gene Hypothesis
5. A Nationwide Hunt for Hidden Disease
Epilogue: Diabetes and Race since 1985
Notes
Bibliography
Acknowledgments
Index
Diabetes: A History of Race and Disease
INTRODUCTION
Diabetes Types and Racial Stereotypes
September 1992
I had never had so much fun with my dad.
He and his friend were visiting me in Nashville.
We were all at the Opryland Hotel, and he was laughing, almost giddy.
I was loving it.
His friend, however, was getting increasingly nervous.
Something’s not right, she kept saying.
Sure enough, during dinner he started having trouble controlling his tongue and his speech.
When the medics arrived and measured his blood sugar, it was 30 milligrams per deciliters. “We don’t understand why he’s still conscious,” they said as they offered him a tube of glucose and told me to get him a piece of pie.
April 1997
My father was still living in Florida when I got the call from my aunt. “You have to come down. Your father is in the hospital and the doctors don’t think he will make it. His neighbors found him passed out on the bathroom floor. He must have been there for at least twenty-four hours. I’m so sorry.”
September 2003
After moving to Nashville to be closer to his only grandchild, my father had taken a job at Sears. He was at work when I got the call. “Your dad is awake, but he is unresponsive. We’re calling an ambulance. Meet us at the hospital.” When I arrived, the doctor came out of my dad’s room to tell me that I needed to be prepared to say goodbye. He didn’t think my dad was going to survive the night.
December 2009
My dad ended up in the emergency room twice within two weeks.
Because of a significant change in his electrocardiogram, the hospital admitted him, ordered an angiogram, and discovered a major blockage in a cardiac artery.
A scheduled stent operation was aborted, however, when the surgeons realized he had blockages in three arteries.
The next step, a planned quadruple bypass, was canceled when the neurologist insisted that my dad’s nervous system wasn’t calm enough to tolerate surgery.
A few days later, my dad decided that he had no interest in such an invasive procedure at his age.
He was eighty-nine years old.
May 18, 2013
My son became a Bar Mitzvah. My dad sang the second Aliyah.
May 31, 2013
My dad passed away peacefully in his sleep. He was one month shy of his ninety-third birthday.
I DID NOT LEARN WHAT IT MEANT to have a close relative with diabetes until 2002, when my elderly father moved to Nashville, where I live.
Until then, I had no clue about the frequent scares and the frequent, seemingly miraculous recoveries.
My father had been diagnosed in 1983, when he was sixty-three years old and still living in Brooklyn.
His physician in New York initially assumed he had type 2 diabetes because of his age and the nature of his symptoms: he had been complaining of constant thirst and frequent urination.
At the time, his diagnosis made sense.
A short, round man, my dad reached five feet, three inches on a good day and weighed about 150 pounds, which qualified as “overweight” on the body mass index scale.
A more informed physician might have realized that something was amiss when my dad’s weight dropped to about 115 pounds within a year, but it wasn’t until my parents retired to Florida in 1985 that an endocrinologist realized that my dad’s pancreas was not producing any insulin.
My father received a new diagnosis: late onset type 1 diabetes, or LADA.
Between 1985 and 2013, when my father passed away, he injected insulin four times a day.
My father’s misdiagnosis and rediagnosis would not have happened a hundred years earlier for the simple reason that no one at the time thought of diabetes as consisting of different types of diseases.
To be sure, physicians, health journalists, diabetes patients, and family members were all aware that age greatly influenced the progression of the disease.
In the days before insulin, diabetes advanced rapidly among the young, leading to significant weight loss, ketoacidosis, and death within a few short years.
For those who were middle-aged or elderly, the body’s deterioration took place at a slower pace, making it possible to live for several years, although often with significant health problems.
People referred to these two forms as acute versus chronic, or severe versus mild, but they did not think of them as differing physiologically and pathologically.
The discovery of insulin in 1921, 1922 minimized the differences between the two forms, because those whose bodies did not produce insulin could now inject a hormone that ameliorated the most severe aspects of the acute form.
Still, by midcentury there was a growing sentiment that the two types were different enough in their age of onset, seriousness of symptoms, and degree of fatness to warrant a sharper distinction, and the terms “juvenile diabetes” and “adult-onset diabetes” came into more frequent use.
By 1979, diabetes specialists considered such differences important enough that they officially divided diabetes into what they called insulin-dependent diabetes mellitus (IDDM) and non-insulin-dependent diabetes mellitus (NIDDM).
By 1995, these two were known as type 1 and type 2.
Today, as I write, there is considerable discussion about whether this classification continues to make sense.
The medical community actually recognizes more than two types of diabetes.
After types 1 and 2, the third most common form is gestational diabetes, in which diabetic symptoms appear during pregnancy and then usually abate after birth, leaving mothers at risk of developing type 2 diabetes later in life.
There are also less common forms, including maturity onset diabetes of the young (MODY), neonatal diabetes mellitus (NDM), and latent auto immune diabetes of adulthood (LADA).
What they all have in common is high blood sugar, but beyond that, they are considered to be quite different.
For example, type 2, which afflicts roughly 90 percent of all people with diabetes in the United States, and in the world, is believed to develop when the body’s tissues become insensitive or resistant to insulin.
Type 1, in contrast, appears to be an autoimmune disease that develops when the body attacks the insulin-producing beta-cells of the pancreas, thereby destroying the body’s ability to produce any insulin.
Research conducted in the last several years, however, suggests that it may be misleading to draw a sharp line between insulin resistance and beta-cell dysfunction, and that it may make more sense both scientifically and clinically to think of diabetes as “a spectrum of disorders” with various degrees of insulin resistance and beta-cell dysfunction.
In other words, the proliferation of diabetes types in the medical literature since 1979 may stem from the medical community’s continued struggle to understand what causes sugar to build up in the bloodstream. The belief in the past that something united all the different forms of diabetes may not have been totally wrong.
When I began working on this book, I thought that I would be writing the first history of type 2 diabetes.
I intended to complement what we knew from several excellent studies of the history of diabetes, some of which had focused on insulin’s discovery and the startling stories, following the hormone’s distribution, of individuals literally rising from their deathbeds, and of parents rejoicing that they would not have to bury their children.
I was especially inspired by the work of the physician-historian Chris Feudtner, who had turned his attention to the challenges that insulin-dependent diabetes patients faced after the initial excitement of the pathbreaking treatment wore off and complications associated with the disease began to emerge.
He showed how those dependent on insulin learned quickly that the hormone was not a cure, but rather a tool for helping them manage their disease.
In this way, his history of diabetes was less about “miracles” and more about insulin’s role in transforming an acute disease into a chronic disease, which still left individuals struggling to stave off the common complications of blindness, limb amputations, kidney failure, and premature death.
But several years into my research I had an “aha” moment when I realized that it would be anachronistic to write a history of type 2 diabetes.
How could I write that history when the idea that diabetes consisted of discrete types emerged only gradually and was not officially recognized until the late 1970s?
And what would it mean to distinguish between different types when insulin’s discovery meant that those who had suffered from the acute form now had a chronic disease similar, although certainly not identical, to the chronic form that others had always had?
This is not to deny differences between those whose bodies produce no insulin and those whose bodies produce some, but the goal of trying to tell the history of type 2 diabetes lost its appeal.
Instead, I wondered what it meant for diabetes to have undergone a division into types.
Why had this split happened?
What was at stake in insisting on their differences?
And what meanings have been ascribed to the different forms?
These questions became more compelling for me when, at an early stage of my research, I discovered evidence that there was a racial element to the meaning of diabetes. For example, a hundred years ago a diabetes diagnosis for my father, a middle-class Jew whose family had emigrated from Poland, would almost have been expected: at that time, diabetes was so closely associated with Jews that it was referred to as the Judenkrankheit , or “Jewish disease”, based on stereotypes about Jews as a people.
* *
Diabetes is a cultural history of a disease whose meaning has changed markedly over the past 150 years. These changes reflect not only scientific advances emerging from the laboratory and the clinic, but also shifting meanings that professional and popular writers ascribed to diabetes as they struggled to explain its emergence as a leading cause of death.
In focusing on the cultural history of the disease, my primary purpose is to excavate the ways that diabetes, in all its forms, has been a locus for the expression of anxieties about economic, social, and political changes over the past century, many of which explicitly involved issues of race.
Consider how the racial profile of diabetes changed over a hundred-year span.
In 1898, a physician reported in the Johns Hopkins Hospital Bulletin that diabetes was “a rare disease in the colored race.” Some twenty-five years later, Elliott P.
Joslin, arguably the leading diabetes specialist of his day, informed readers of the Journal of the American Medical Association that diabetes was “two and a half times as common among Jews.” Jump ahead roughly forty years, and Max Miller, an expert on diabetes in Native American tribes, wrote that “both male and female Pima Indians had an extraordinary frequency of ‘diabetes’, higher than that reported in any other population studied.” By the early 1980s, a physician practicing in southern California was insisting that “Mexican Americans are a diabetic race.” And as I write this, in 2019, someone who turns to the National Institutes of Health to learn about the populations most at risk for developing diabetes will read: “African American, Alaska Native, American Indian, Asian American, Hispanic/Latino, Native Hawaiian, or Pacific Islander.”