When Katelyn went to see Dr. Poornima Rao shortly after her second child was born, she was prepared to hear the worst.
During her pregnancy, she was diagnosed with gestational diabetes and one of the doctors overseeing her care told her she would probably be diabetic for the rest of her life.
“I knew it would be something I would have to deal with at some point in my life,” she remembers thinking. Her family has a history of diabetes. “But I expected [age] 50 or 60, not 29.”
Katelyn, now 32, went to Rao after her pregnancy to find out what the rest of her life would be like with diabetes.
But Rao, an endocrinologist at the Allegheny Health Network Center for Diabetes and Endocrine Health, had surprising news: Katelyn’s test results didn’t show full-blown diabetes. Her blood sugar fell just below that level. Instead she was diagnosed with prediabetes.
There was hope.
About 70 percent of people diagnosed with prediabetes go on to develop diabetes. And whether or not Katelyn’s condition did progress would largely depend on what choices she made going forward.
The rise of predisease
The concept of “prediabetes,” now a decade old, is the latest in a recent trend of diagnosing prediseases to delay the onset of chronic diseases. In 1994, the term osteopenia was coined to describe patients who could develop osteoporosis. And in 2003, the diagnosis of prehypertension was given to patients with blood pressure just below full-blown hypertension.
The idea behind these early detection diagnoses is that if patients know early enough that they are at risk, they and their doctors can intervene before full disease hits. This early detection could not only help improve lives but also prevent patients from developing multiple chronic diseases.
Chronic diseases, such as diabetes and hypertension, account for a huge portion of the bloated healthcare spending in the United States. The Centers for Disease Control and Prevention has written that treatment of chronic diseases has to change if the country will ever get costs under control. For every dollar spent, 75 cents went towards treating patients with chronic disease, according to the CDC.
In Pennsylvania, there are 7.7 million people with chronic diseases, which are expected to cost the state $1.7 trillion over 15 years, according to the Partnership to Fight Chronic Disease, an international nonprofit committed to raising awareness about preventable chronic diseases.
Hypertension, which can lead to heart disease and strokes, plays a role in both of those — the first and fourth most common ways people die in Pennsylvania. And diabetes is the sixth leading cause of death.
In Allegheny County, located in the so-called “Diabetes Belt,” which stretches from the South through Appalachia, the problem is even more severe. The county has higher rates of heart disease, diabetes and strokes than the state and the nation.
The “predisease” diagnoses have not come without controversy. Some medical experts worry these new terms are pathologizing otherwise healthy people. Many of the people diagnosed with prediseases, they argue, will never develop the actual diseases.
“While it has the potential to help some, it always has a hidden danger: overdiagnosis — the detection of abnormalities that are not destined to ever bother us,” writes Dr. Gilbert Welch in the book “Overdiagnosed: Making people sick in the pursuit of health.”
Unnecessary diagnoses for those who may never develop the disease, critics such as Welch argue, could lead to unnecessary stress and stigma and will be used by the pharmaceutical industry to sell drugs to otherwise healthy people. It could actually increase the demands on healthcare workers. It has “huge workload implications for both primary care and community services,” wrote a group of researchers in BMJ (formerly called the British Medical Journal) in 2015. They argued that it was speculation whether these prevention strategies could save money in the long run.
Anthony Viera, the chair of the Department of Community and Family Medicine at the Duke University School of Medicine, codified the rules for when doctors should treat prediseases in a 2011 journal article: when the benefits of treating individuals are not outweighed by any larger harm at the population level.
For example, a group of researchers in Barcelona in 2008 found that a particular treatment for preosteoporosis prevented some patients from developing osteoporosis. But the overall benefit from doing the interventions was probably not worth it. “In other words,” they wrote, “up to 270 women with preosteoporosis might need to be treated with drugs for three years so that one of them could avoid a single vertebral fracture.”
But the primary treatment for prediabetes and prehypertension are lifestyle changes such as patients eating healthier and exercising more, rather than taking medications. These activities don’t have much of a downside, so diagnosing these prediseases has become a priority for many healthcare workers in Pittsburgh and beyond.
Dr. Raghu Tadikamalla oversees the hypertension program at West Penn Hospital. He says the problem isn’t overdiagnosing healthy people but normalizing unhealthy behavior. A typical American life right now might include going to work, sitting at a desk for eight hours, going home and watching TV and eating lots of processed foods, he says. As a result, 90 percent of Americans will be diagnosed with hypertension at some point in their lives, he says.
“We have normalized disease,” he says. “For many years, people thought it was natural to develop hypertension as we age … But we’ve begun to realize that’s not true.”
He pointed to a study of two Native American tribes in the Brazilian rainforest: one was exposed to Western food and one wasn’t. The tribe without exposure showed the same blood pressure levels at the age of 60 as when the tribe members were teenagers. The tribe that received Western food aid saw their blood pressure rise.
“We’re beginning to realize this increase of blood pressure over time that occurs in the U.S. — although it has become what is expected, it’s not normal,” he says.
During her pregnancies, Katelyn’s husband would grill meat and vegetables for dinner. He made her egg casseroles for breakfast.
Katelyn, an inspector for the Food and Drug Administration (who asked that her last name not be used because companies frequently search the internet for her name before visits), ended up eating a lot of peanut butter and apples as she tried to pair carbohydrates with proteins. She looked obsessively at packaging to make sure none of her snacks had more than 15 grams of carbohydrates.
Educating patients about nutrition is one of the main ways Pittsburgh doctors say they treat predisease patients. Because primary care visits can be only 15 minutes, they often will refer patients to a dietician. UPMC also has special classes where prediabetes patients learn about their disease and meet with others.
“Physicians fall short when we say improve your diet and exercise and, without guidance, it leaves a lot of burden on the patient,” says Dr. Sandra Sobel, the clinical chief of endocrinology at UPMC Mercy.
UPMC offers diabetes prevention classes: Patients come in weekly for 12 weeks, biweekly for two months and then monthly the rest of the year.
At the start of a recent class on the South Side, all four patients weighed themselves. As a group, they had lost 5 pounds that week. They each commit to losing 7 percent of their body weight and exercising 150 minutes per week.
A study of more than 3,000 patients showed that patients who complete the program decreased their risk of developing diabetes by 58 percent.
“Do you have prediabetes?” Peggy, one of the patients, asked Karen, who was attending the class for the first time that morning. Peggy, 67, lost 40 pounds in the class four years ago but had since put the weight back on and returned to take it again.
Karen’s doctor told her the week before: “We’re not playing around anymore, you need to do this.” She lost 4 pounds that week even before the first class.
“It’s not like I don’t know what to do — that’s not the issue,” Karen told the class. “It’s this person in my head that says you should have what you want when you want it.”
Diane Battaglia, a nurse who has been leading the classes since 2010, says she used to only take new patients a couple of times per year. But now she takes new patients such as Karen as soon as they sign up to take advantage of the initial motivation.
This kind of group accountability and support, combined with a health expert’s advice, is key to the program’s success, Battaglia says. But there are currently only two classes in Pittsburgh, and this class was less than half full. Battaglia is hoping that increased state support in the coming year will increase referrals.
Several Pittsburgh doctors who spoke for this article say that, while they have seen some patients make major changes, the majority of their patients struggle to maintain improved diet and exercise over time.
Dr. Dennis Bruemmer, a cardiologist at UPMC Presbyterian, says some of his patients feel hopeless about exercising more and eating healthier. “They say, ‘If I have to change my lifestyle, a gym membership costs money. Fruits and vegetables and lean meat are a lot more expensive than a fast food place.’”
Everyone can take a walk or prepare meals at home, though it does take more time and effort, Bruemmer says. “It almost sometimes feels for us, this discussion that we’re having, is a justification for patients for why they are not participating.”
Some researchers who have been studying what is most effective say we need to stop putting so much of the burden on individuals to change their habits. They say medical interventions can have a bigger impact if they focus on broader environmental changes.
This is what was found in a 2012 meta-study by Dave Chokshi, the chief population health officer for NY Health + Hospitals, the largest public healthcare system in the country. In New York, the more effective programs included “increased tobacco taxes, comprehensive smoke-free-air law, mass-media campaigns against smoking and sugar sweetened beverages, banning of trans fats from restaurants and a restaurant calorie-labeling initiative,” Chokshi says.
Patients don’t have much control over some factors. For example, the pollution that residents in the Mon Valley experience leads to a 5 percent greater risk of getting diabetes than people who experience Lawrenceville pollution, according to data from a 2018 study in the Lancet, a leading medical journal.
A growing body of evidence shows that living near greenery can reduce the stress that can lead to hypertension, diabetes and obesity.
Dr. Esa Davis at UPMC General Internal Medicine says tackling broader environmental challenges is key to fostering equality. “If we say the health of all of the members of our society is important, we would set up a lot of things to meet that,” Davis says. “We would make neighborhoods more walkable, more sidewalks, more safe crossings, more green space.”
We would have more nutritious affordable food, she adds, and the ability to be active at work. “We would do things to help support people in these efforts.”
Katelyn’s daughter brought home a cold over the winter, and the entire family got sick. To stay hydrated, Katelyn bought Gatorade for the kids and her husband and a zero-calorie Vitamin Water for herself. She knew she shouldn’t have the extra sugar.
“I basically live as though I do have diabetes to ward it off in the future,” Katelyn, who is now 32, says.
While having diabetes during her pregnancy was traumatic, Katelyn’s contact with the disease through her family members has given her a mixed view on how problematic it really is. Her grandmother ate unhealthy food, was overweight and watched three soap operas per day, with diabetes — and lived into her late 90s. She knows intuitively how bad the disease can be but also that it’s possible to live with it.
Katelyn’s efforts reflect the potential for individuals to change their behavior but also the challenges they face in a culture where unhealthy eating and sedentary living are the norm.
Katelyn likes junk food. Her husband teases her about her love of liquid cheese. “I’d rather have a plate of cheese fries than a piece of cake.”
The idea of prediseases had a setback in 2017 when the American Heart Association stopped using the term prehypertension. There were two problems: The first was that new research showed prehypertension blood pressure actually was associated with increasing health problems. Therefore, it wasn’t really a predisease because the blood pressure was already causing problems — the problems just got worse as the blood pressure went higher.
Another problem was that one of the primary reasons for diagnosing prediseases — to motivate changes in behavior — wasn’t working.
Paul Munter, a professor of epidemiology at the University of Alabama who worked on the new hypertension guidelines, cites a sobering study of prehypertension patients: The percentage who ate healthier and exercised more didn’t increase after a diagnosis. “So having that definition didn’t really move the needle at all,” Munter says.
It’s not all bad news. The share of people dying from heart disease, which is often caused by hypertension, continues to decrease, Munter says. He attributes the decrease in large part to the medicines used to treat it; they’re more effective and more widely used. While the number of patients who have hypertension hasn’t changed much, medication is helping more of them keep it under control.
For Katelyn, the predisease diagnosis has, at the very least, inspired increased consideration of choices and their consequence.
More than 80 million people are estimated to have prediabetes but 90 percent don’t know it. About 70 percent of prediabetes patients develop Type 2 diabetes eventually.
The eating habits that Katelyn learned from her nutritionist continued past her pregnancy. In the year after her second child was born, she lost 20 to 30 pounds in addition to her pregnancy weight. Katelyn was initially prescribed metformin (a drug to treat Type 2 diabetes) to help keep her blood sugar levels down. But when she returned for her six-month checkup, Rao told her she didn’t need to take any more medication.
“Ten years ago, we were not as aggressive as we are now with managing these patients,” Rao says. “And that’s because more and more data has come out, saying an earlier approach does result in patient benefits."
At Katelyn’s last checkup in November, Rao put her back on a low dose of metformin.
She is not alone. Despite a decade of effort trying to persuade individuals to address their prediabetes, the number of people who develop diabetes continues to rise. More than 30 million people in the United States now have the disease, more than double what it was 25 years ago.
Would these numbers finally turn around if more people took time out of their busy lives for prevention classes? Or do we, as a society, need to make more radical changes to our environment and culture to make it easier for patients to do what they say they want to do?
Katelyn doesn’t want her children to get diabetes. But she also feels cultural pressure to let them enjoy some normal kid things like candy and baking brownies on the weekend.
“My daughter … would eat nothing but candy all day if you let her,” she says. “She is a sugar addict.”
After three days of pancakes in a row, Katelyn says she tells her daughter she has to eat something else. Her 2-year-old son is already addicted to watching TV, she says, so she makes him go outside to play in the park.
“I know if both of them don’t have some sort of moderation,” she says, “we’re going to be in the same predicament.”
Oliver Morrison is PublicSource’s environment and health reporter. He can be reached at firstname.lastname@example.org or on Twitter @ORMorrison.
This story was fact-checked by Kieran McLean.