I had never been to a medical conference before, and the American Diabetes Association’s 75th Anniversary meeting was a pretty overwhelming place to start. Five days of proceedings; hundreds of presentations, thousands of participants, almost 2,000 posters explaining people’s work, and fancy displays by drug companies and device makers representing the more than $60 billion spent on diabetes supplies and medications per year.
My daughter has type 1 diabetes. No other child at her school has diabetes. None of our close friends or family members is dealing with it directly either, so it often feels like something that our family faces in isolation. But going to this conference made evident the huge size of the diabetes community—and the diabetes industry, though most of the apparatus is for type 2 diabetes rather than type 1.
It was hard for me to make sense of the event and organize it in my head. Part of me—the parent part—really didn’t want to be there, and hated that I had a reason to attend. And another part of me—the curious student part—was excited to have the chance to learn more about all aspects of the disease from many experts in the field. In my mind, I ended up dividing the conference into two categories: how much has been accomplished; and how much remains to be done.
My favorite panel was a sum-up presentation called 50 Years of Diabetes Research and Treatment, where four panelists: doctors, researchers, and patients who have had experience with diabetes, particularly type 1, over the long term, talked about how the field has changed, and what they’ve learned.
The most obvious improvements have been in the equipment. The panelists talked about sterilizing their glass syringes after each use; sharpening the needles with emery stones, anxiously worrying that their stores of insulin would run out (this was back when insulin came animals and took a long time to synthesize). Before the days of portable blood glucose monitors or test strips, patients would take a little urine, mix it with Benedict’s solution, and heat it in a spoon over a gas flame. If the solution turned red, the glucose level was high; if blue, then normal.
The development of different formulations of insulin, and different ways to deliver it, enabled patients to be less regimented in their eating and more precise in their dosing. One doctor mentioned that the invention of long-acting insulin, which helped people lower their baseline blood sugar, helped combat the condition of diabetic dwarfism, which was often seen in children with type 1—even after the discovery of insulin in 1922. The synthesis of glucagon meant that people could be rescued from disastrous episodes of hypoglycemia.
Other discoveries that don’t seem directly connected to diabetes have nevertheless been instrumental in its treatment. Fred Whitehouse, a former head of the ADA and one of the physicians on the panel, mentioned how antibiotics saved the extremities of many people with diabetes, who otherwise would have lost them to infection. Another panelist pointed to the discovery of recombinant DNA and to studies of how to control cell differentiation in the lab as leading, after decades of research, to the ability to create new kinds of insulin and to the creation of beta cells from stem cells. Douglas Melton, the Harvard investigator whose lab has pioneered a way to turn stem cells into beta cells, commented during his own symposium that, “It’s a completely non trivial thing that you can now make billions of beta cells: if you had said this to me when I was an undergrad I would have fallen out of my chair.”
In the same forum, Dr. Richard Burt described additional promising work with stem cells, in this case using them to achieve an “immunological reset” in 18 out of 25 patients, slowing the body’s attack on the beta cells and allowing the patients to live free of insulin. After 5 years, 8 of the patients were still insulin-free. (It must be noted, however, that patients experienced side effects including nausea, hair loss, Grave’s disease, and pneumonia.) Interestingly, three of the patients who never went into remission were those who were in DKA at diagnosis—perhaps because all of their beta cells were destroyed before they started treatment.
Dr. Michael Brownlee, who was diagnosed with type 1 as a child and practices endocrinology, pointed out how hopeless the disease sometimes seemed, even as late as the 1960s. He quoted a 1967 ADA textbook saying: “The person with type 1 can be reassured it is highly likely he will live at least into his 30s.”
Brownlee has had diabetes for more than 50 years, and the woman who spoke after him, M. Kathryn Ham, has had it for 78. In introducing her, the moderator, quoting Elliott Joslin from 1923, said, “To live well with diabetes takes brains. It takes courage and a lot of work.” (Another panelist commented that it also helps to have a mild case of obsessive-compulsive disorder.) Ham was so weak after her diagnosis, when she was 8, that her mother home-schooled her for a year, and her father would carry her up and down the stairs. Growing up in a small town, she felt like she was “the only person in the world with this disease.” (A reminder that the lives of people with diabetes are better now not just because of improved equipment and insulin formulations, but also because of the ability to connect and share with others around the world.) For a while, Ham lived on unsweetened bran muffins bound together by xanthan gum, which she said tasted like cardboard. Told she could never have children, she had three. Her husband died five years ago, and she now lives alone, for the first time in her life. “I was told all my life I was dependent; but I rallied.” Some of her secrets, she says, are being consistent in what and when she eats; keeping juice by her bed for overnight lows, and eating a diet low in sweets, with rarely more than a glass of red wine a day. When she finished her talk, she got a standing ovation (the only one I saw at the conference), for her honesty about the many difficulties of living with this disease, and her grit in rising above them for so long.
So: over the past 75 years, equipment, insulin, and technologies have improved dramatically. So has the science, paving the way for what we hope will be truly groundbreaking developments in diabetes care, including the artificial pancreas and the creation of an unlimited supply of healthy beta cells.
Remains to Be Done
But: managing this chronic, degenerative disease is still an enormous burden—for patients, their families, and for the country as a whole, as our health care system groans under the cost of treating diabetes.
One aspect of the conference made this especially clear—all the lectures on diabetes complications. Of the 160 talks listed in the summary schedule, more than a quarter of them had to do with complications of the disease, including “The Great Debate—Current Controversies in Diabetic Foot Care,” “Wound Care in the 21st Century,” “Clinical Challenges in Diabetic Kidney Disease,” “The Eyes Are Windows to the Soul—Improving Care and Quality of Life for Patients With Vision Loss,” “Diabetes and Cognitive Dysfunction,” and “Cardiovascular and Other Clinical Effects of Hypoglycemia.” (I chose to avoid these lectures, so can’t report on them directly.)
Michael Brownlee pointed out that it’s these complications that make diabetes the devastating, expensive disease it is. “Without the complications, it would just be a hormonal disease—it’s because of the complications that this is such a big, problematic disease.” His went on to list some sobering statistics. Diabetes is the leading cause of blindness in working age adults, the leading cause of amputations, and the leading cause of kidney failure, which occurs in about a third of people with type 1, and more than a fifth of people with type 2. It increases the risk of stroke 2-4 fold, along with the risk of dementia and neuropathy. Of the people who arrive at the hospital having suffered a heart attack, 2/3 have diabetes or pre-diabetes.
What’s more, the mechanism of who gets complications and why isn’t well understood. As Brownlee reported: “There are people who have perfect A1Cs who get every complication there is, and often early.” While others, who are less careful, live a long life with few complications. As the parent of a child with type 1, this is a hard thing to hear, because it means that no matter how hard my daughter works to maintain good blood sugar control, she could still be one of the unlucky ones haunted by complications. Or she could be one of the lucky ones.
More worrisome for our health care system as a whole, there has been very little progress in preventing the disease. Both type 1 and type 2 are on the rise: since 1985 the number of people with diabetes worldwide has increased ten-fold, from 35 million to 371 million; and it’s projected to double again over the next two decades. (The conference talks were divided into several categories, including Acute and Chronic Complications, Insulin Action/Molecular Metabolism, and Immunology/Transplantation. Notably, prevention was not one of the categories.)
I came away from the conference appreciative of all the hard work and brainpower that has led to vast improvements for those with diabetes. But it’s not enough. Billions of dollars are spent on diabetes drugs each year, yet hundreds of millions of people are still facing devastating complications from this disease. Fred Whitehouse stated that the Association’s goal is “life free of diabetes and all its burdens.” The very size and bustle of this 75th Anniversary conference points to how far away from that goal we are. My hope is that the 100th anniversary conference will be much smaller, with no forums necessary on diabetic foot care or kidney transplantation. Instead, maybe a former patient will be able to stand up and give a speech about what it was like to have diabetes—and then have it go away.