Wearing a maroon sweatshirt with “San Leandro Rebels” emblazoned on the front, 17-year-old Gail Punongbayan didn’t flinch when a physician’s assistant drew blood.
“One, two, three, four, showtime!” Jonathan Ramos, a physician’s assistant at UCSF Benioff Children’s Hospital, called out as he pricked Gail’s finger to smear a bright red drop of blood on a small card to check her blood sugar.
The high school junior knows the routine. For four years, she’s been going to the children’s diabetes clinic at UCSF Benioff Children’s Hospital in Oakland, California, every three months for checkups.
At this one, Ramos first checks her height, then her weight and blood sugar. The routine may seem normal, but Gail has a condition that is extremely rare for kids or teens her age.
Or it used to be.
Today, Gail is part of a growing number of kids and teens living with type 2 diabetes. Despite their young age, many of them are experiencing complications and disease progression four times faster than adults with the same condition, setting off alarm bells for the diabetes experts treating them.
From 0 to 5,300 cases a year
Stories like Gail’s are no longer a rare occurrence. The Centers for Disease Control and Prevention (CDC) estimated in 2012 that there were 5,300 new pediatric type 2 cases diagnosed that year in the United States.
That number is far lower than the 17,900 kids receiving diagnoses of type 1 diabetes, but it’s a big increase from essentially zero, which was the case in 1990.
The increase mirrors the trend of rising type 2 diabetes cases across the United States. Currently, almost one-third of the country, or 100 million people, have diabetes or prediabetes, estimates the CDC.
There are two main types of diabetes: type 1 and type 2. In type 1 diabetes, the immune system attacks the pancreas, rendering it unable to produce insulin.
In type 2 diabetes, the pancreas still makes insulin, but the body has become more resistant. This can happen for a variety of factors, like diet, obesity, or genetic predisposition. The pancreas will keep making more and more insulin, but eventually the organ can become worn out. In some cases, it stops producing insulin.
Experts have linked the skyrocketing rate of childhood obesity as one factor for the sudden spike of pediatric type 2 diabetes cases. The CDC estimates 1 in 5 school-age children are obese. That’s triple the number from the 1970s.
But obesity isn’t the only factor in the rise of childhood type 2 diabetes cases. After all, there were children with obesity before 1990. But virtually none of them developed this disease.
Dr. Jane Lynch, FAAP, chairperson for the section on endocrinology at the American Academy of Pediatrics and professor of pediatrics at the University of Texas, San Antonio, said multiple factors over decades have put children at risk.
These factors include a rise of gestational diabetes, changes in food processing, and less activity time for children.
“We also know there was a much higher rate of gestational diabetes and moms with diabetes having children,” she said. “And we know there’s a genetic predisposition to developing type 2 diabetes.”
Additionally, Lynch says that changes in the American diet — including more processed food full of fat and sugar — has put kids at risk. A high-fat, high-sugar diet diminishes the body’s sensitivity to insulin, which processes blood sugar, leading to pressure on the pancreas.
“We know that the diet really changed during those years. We’re doing a lot more processed food, glucose, and serving sizes,” she said.
Another less obvious factor is air pollution. A study published this year in The Lancet: Planetary Health estimates that 150,000 diabetes cases every year in the United States could be linked to air pollution.
The danger for adolescents
Many of these young people receive diabetes diagnoses at the beginning of puberty, when a flood of human growth hormone is released, rendering the body less sensitive to insulin.
Gail received her diagnosis at 14.
“The growth hormones that you make to grow rapidly in adolescence antagonizes insulin,” Lynch explained. “So, the mix of hormones during adolescence, of the pubertal hormones and the growth hormones, are just unique and different from adults.”
Getting a diagnosis at 13 or 14 also means teens are grappling with a chronic and potentially dangerous illness, just at the time when they might want to assert more independence from their parents.
Mark Heyman, PhD, diabetes psychologist and a certified diabetes educator with Beyond Type 1, says that working with teens who have either type 1 or type 2 diabetes can be a challenge due in part to their age. Teenage rebellion can mean ignoring parents or even their medication, so they don’t feel so different.
“The parents have a hard time taking their hands off and not being actively involved,” Heyman explained. “It makes [teens] rebel more, they say ‘I don’t really care.’”
As teens start to assert their independence, they may also turn to online sources for answers so they don’t feel alone. Sarah Bacon posts on YouTube about her experience with diabetes in order to lessen the stigma of the disease.
“I would say that it’s the teenage group I hear from the most,” Bacon told Healthline. “When I was diagnosed, I was given many, many leaflets about diabetes. But one of the first things I did when I got home was to look on YouTube. I feel like sometimes ‘clinical’ answers aren’t enough, so I go and ask people on social media who I know are going through the same things I go through.”
At just 17, Gail says she’s at an age when she’s trying to be more independent in managing her disease.
“My mindset is changing. I need to take responsibility. I need to do all of this,” she told Healthline.
But like any teenager, she can grow irritable at her dad’s instinct to monitor her diet.
“He’s always yelling and getting mad at me if my sugar’s not right,” she said. “He’s controlling what I’m eating. It’s hard to eat what I want and be satisfied... because you can’t just stay on eating salad every day for the rest of your life.”
The fight to control blood sugar
As Gail waited for her endocrinologist, Dr. Sonali Belapurkar, during her last checkup, she confided in her dad that she was worried about a measure of blood sugar called A1c. Last time she was at the clinic, this measurement — an average of her blood sugar over several months — was so high that Belapurkar wanted to see her in just one month, as opposed to the normal three.
“It’s probably high,” Gail told her dad. “My A1c is probably high, I can tell.”
Volatile blood sugar is common among these young people with diabetes.
The TODAY study, a major multiyear study funded by the National Institutes of Health, found young patients had four times the beta cell deterioration compared to adults. These cells in the pancreas are what make insulin. When they stop working, it becomes incredibly difficult to control blood sugar.
Lynch says about half of the kids entered beta cell failure, putting them at high risk for complications.
“These kids are at much higher risk to require insulin within two years, and they are at a much higher risk to develop diabetes complications within a few years, unlike adults who can be fairly asymptomatic for 10 to 12 years since they’re diagnosed,” Lynch explained.
The future of the diabetes generation
Over time, having type 2 diabetes means an increased risk of kidney failure, heart disease, nerve damage, eye damage, and a host of other conditions.
Nancy Chang, PhD, creator of the type 2 diabetes program at Children’s Hospital Los Angeles (CHLA), worked on the TODAY study and said some of those young patients already have serious complications, including blindness and kidney failure.
“If they develop diabetes at age 10 and if they don’t take good care of their diabetes… by the time they’re 20 years old they’re going to go on dialysis or be blind, and unfortunately, that’s what we’re already seeing,” Chang said.
In the TODAY study, researchers found that high blood pressure increased from 11 percent for these patients at the time of diagnosis to 34 percent, less than four years later.
Microalbuminuria — or protein in the urine — rose from 6 percent at time of diagnosis to 17 percent less than four years later. Microalbuminuria is an early sign of vascular damage and indicates increased risk of heart and kidney disease.
About 14 percent of these young patients developed retinopathy or eye damage less than five years after diagnosis.
Lynch says studies have found kids often do well on medication for about five months. But then they come back to the hospital at one year with extremely high blood sugar and complications.
“They disappear at five months looking great,” she said. “They come in pretty sick, and that’s been more bad news.”
Additionally, living with diabetes from childhood into adulthood can mean the next generation is at higher risk. Lynch says early data has shown that when these patients get pregnant, they’re at high risk for serious complications, including miscarriage, still birth, and birth defects.
“We’re seeing — we are fearing — dialysis and heart attacks by late 20s in these kids, and we’re continuing to be really scared by the pregnancy outcomes,” Lynch said.
“They should be in the really productive years of their life, and instead they’re really sick.”
What treatments are there?
While there are dozens of medications for adults with type 2 diabetes, the U.S. Food and Drug Administration (FDA) has approved just two medications to treat type 2 diabetes in people under 18: metformin, which makes the body more sensitive to insulin, and injectable insulin itself.
Lynch says that medical experts across the country have come together to pressure pharmaceutical companies and the FDA to do more studies to see if some of the dozen readily available diabetes medications for adults could be given to teenagers.
And while adults can benefit from intense lifestyle intervention, this has been found to be ineffective in turning around most cases of type 2 diabetes in children, according to TODAY researchers.
Chang said the team was surprised when intense lifestyle intervention for patients during the TODAY study didn’t improve their health or their disease. As a result they reconsidered how to treat these patients.
“We thought lifestyle change was going to be better, but we were not able to show it in the study,” she said. “I think the reason why is all the challenges we have to work with in this population, to help them eat healthier and to help them exercise more.”
A new study published last month in Diabetes Care also found that aggressive treatment with a type of insulin and metformin or just metformin alone didn’t stop the progression of the disease for many of these younger patients.
Treatments on the horizon
In the hopes of helping these kids, some experts have turned to surgical options to help them lose weight.
Travion Shinault of Denver, Colorado, underwent bariatric surgery earlier this year to help treat his diabetes. Diagnosed at age 15, Shinault struggled to keep his blood sugar stable. He explains that he wasn’t always careful with his diet and sometimes ate food that spiked his blood sugar to fit in.
At 19, Shinault was on a cocktail of medications to help manage his diabetes and subsequent complications. Eventually, his doctors came to him and asked if he wanted to look at surgical options — although they were still experimental as a diabetes treatment for a teen.
“I was pretty up for it,” he told Healthline. “My family members… they were a lot more nervous. They [constantly] asked a lot of questions about it.”
Shinault had to take a semester off from college at Colorado Mesa University to recover from bariatric surgery. But now a few months after surgery, Shinault has lost weight and is taking solely metformin to help control his blood sugar.
He credits the surgery with helping him stick to a healthier lifestyle.
“Now that I’m able to eat more, I can do more vegetables and do more healthy foods,” he told Healthline.
Dr. Phil Zeitler, section head of endocrinology at Children’s Hospital Colorado, treated Shinault and was co-author of a study published earlier this year in JAMA Pediatrics that looked at the effects of bariatric surgery on 93 adolescents with type 2 diabetes.
“In those kids who have very aggressive type 2 diabetes, doing this early may help maintain metabolism,” he said. “Either we’re taking the diabetes away for a long period of time or at least putting it off.”
Zeitler and his team found that the young people with type 2 diabetes who underwent the surgery had better control of blood sugar, improved kidney function, and decreased risk of cardiovascular disease compared to those who were only treated with medication.
But Zeitler says this surgery doesn’t “cure” their diabetes. It can buy them time, though, so they can live longer and healthier before their diabetes progresses again.
He also points out this surgery comes with its own set of risks and complications.
“I share people’s concerns about how extreme it is to be doing surgery on kids to deal with diabetes,” he told Healthline.
Trying to treat kids without a safe place to play
At CHLA, Chang created the new type 2 diabetes program in 2017 after seeing how ineffective diabetes treatment was for these younger patients.
“We work heavily on the psychosocial issues, and we also have programs to help them try to modify their behavior, so we don’t only treat them in the clinic. Right now, we are going into the community to try and help them,” she said.
Part of the treatment involves a therapist to help kids overcome the stigma and accept the disease.
“Most of those kids also have parents with type 2 diabetes,” Chang said. “There’s several issues that we need to work with these kids in order to help them accept the diagnosis.”
For 12-year-old Megan Perez and her mother Ilda Gomez, the center has been a helpful source of education and support. Both mother and daughter are living with type 2 diabetes.
Gomez says she was horrified to find out her daughter had type 2 diabetes last year.
“It was the worst day of my life, because me being diabetic myself, I know how it feels when your sugar is high, when you have lows,” she said. “There’s certain days where you just feel really sick.”
After Megan’s diagnosis, Gomez jumped into action to ensure her daughter wouldn’t develop complications from the disease. She took her daughter to CHLA, where they enrolled her in their diabetes clinic.
Gomez says that as a family, they’ve been going to the clinic to learn how to cook healthier food, avoid hidden sugar, and find better ways to stay active. But it’s still hard.
At Megan’s school, there’s no longer a gym class. The nurse has to help count her carbs from her school-issued lunch so that she doesn’t spike her blood sugar from cafeteria pizza.
“We get a little tiny tray, really tiny, and it has a little bit of salad in it,” Megan said of her lunch.
Megan is also interested in biking and maybe running, but the park is a 10-minute drive away, and the family only goes on weekends.
“The thing is, we live in South Central LA, our neighborhood is really bad,” Gomez said. “There’s no way I will let her go outside.”
Chang’s team is also running up against a deadline to help many of these kids. Most of them in the clinic are on California’s version of Medicaid, called Medi-Cal. Once they turn 21 and if they stay on Medi-Cal, they won’t have access to the specialists who help monitor and control their diabetes.
“[They might] have a primary care provider who usually does not know how to manage the medications that are not the basic medications for type 2,” Chang explained. “They should still see a dietitian. They should still have psychological support. And they can’t have that [on Medi-Cal].”
Chang stresses that without that help and support, “the future for these kids are very, very grim.”
Growing up with diabetes
For Gail, there are good and bad signs about the state of her diabetes.
At her checkup, Belapurkar was concerned that Gail had occasionally blurred vision and irregular liver enzymes. But she also gave her a high five for losing weight in the last few months and reported that her A1c levels were back down.
But the teenager is also having trouble staying on top of her medication. Between getting ready for school and needing to prep a healthy breakfast to eat before taking her medication, Gail says she often forgets her morning insulin pill.
At that point, Gail got a little quieter when Belapurkar followed up with a question about school, asking if it’s stressful.
“Yes,” Gail said.
Belapurkar found a new type of insulin for Gail that she can take at night with food, so she doesn’t have to worry about her morning routine. But Belapurkar stresses that the teen needs to be on top of her diet and her medication schedule to stay healthy.
All while also surviving her senior year of high school.
“I’m trying to go back to what I usually do, but I’m lazy,” she told Belapurkar softly. “Life is hard.”
Belapurkar paused before answering.
“I know it’s hard. But it’s doable, right?”