This powerful series on diabetes from Reuters lays bare our health system’s gravest faults

It’s rare these days that we get an amazing piece of health journalism that really explicates what’s wrong with the U.S. health system. But “Out of Control: America’s losing battle against diabetes,” is a series of three stories published starting in August by Chad Terhune, Robin Respaut, and Deborah J. Nelson at Reuters, gets right to the troubles plaguing American health care. It’s a series about the patients who get too little care; the ones who get too much; and those who are injured by doctors and hospitals. It’s about a system guided by money and who gets it. And it’s about how and why the U.S. health system does not come close to being the best in the world, as politicians and the medical stakeholders are forever claiming.

The Reuters’ team forcefully illustrates the overuse, underuse, and misuse of medical care in America — the same trio of failings identified more than three decades ago by Dr. Mark Chassin and colleagues. Chassin, who was then at the Mt. Sinai School of Medicine in New York City, is stepping down at the end of the year as head of the Joint Commission, the hospital accreditation agency. It’s worth recalling his framework, which to me explains why the Reuters’ stories are so powerful and why we have not yet made much systemic improvement in our health care.

Reuters tells its story through the lens of diabetes, a disease that now plagues one in 10 Americans. In 2017, the Reuters team reported, the U.S. mortality rate for diabetes was 42% higher than the average among 10 other industrialized countries. Many of those Americans were being treated with insulin, a drug discovered a century ago. Sales of all diabetes drugs including insulin have increased 212.5% from $24 billion in 2011 to $75 billion in 2020, second in total revenue only to drugs used to treat rheumatoid arthritis and other inflammatory conditions. You would think with all that money spent on drugs to control the disease, the U.S. would have something to crow about. Not so, as the Reuters’ reporters showed. 

“We had been making a lot of progress until around 2010 or 2011,” Terhune told me. Then things began to change. “Complications from diabetes seem to have rounded a corner in 2019-2020 in middle-aged adults. This shouldn’t be happening given how much money and resources we have put into treating the disease.” He added, “Diabetes has followed the obesity crisis and has to do with healthy lifestyles and health disparities. It’s a reflection of the income inequality.”

The first story in the series, “How the pandemic laid bare America’s diabetes crises,” quickly summarizes the reasons for the medical catastrophe. “The reasons for the worsening outlook for diabetes patients are rooted in the American lifestyle and medical system,” the story explains. “More Americans are developing diabetes earlier, even in childhood, because of long-term societal shifts toward sedentary lifestyles and unhealthy diets, according to researchers and doctors.” Furthermore, those who do contract the disease may have a harder time managing it because of the lack of consistent medical care. Many ration medications and limit doctor visits to avoid large out-of-pocket costs from deductibles and coinsurance common in today’s insurance policies. Ironically, the insurance industry shoved those onerous costs onto policyholders to discourage them from seeing doctors in an attempt to lower the overall cost of health care, and in turn, the insurers’ costs as well. As the Reuters team shows, that policy has boomeranged by creating higher costs owing to delays in care that impose life-threatening health consequences on their victims. In one study cited by the report, researchers found that lower-income workers and their family members with diabetes had 22% more ER visits for preventable complications after switching to high-deductible plans. Ed Gregg, a former CDC researcher and now a professor at Imperial College in London, told Reuters, “The problem is worse in young adults, and there isn’t improvement in older adults. The magnitude of the problem has set us back 15 to 20 years.” 

So, it’s fair to ask: Is our health system killing Americans with diabetes?

The reporters answer that question by telling the stories of patients who struggled to get care, like 42-year-old Kate Herrin who lived in rural West Alexandria, Ohio, and had trouble controlling her diabetes even in better times. When the pandemic hit, the challenges of the disease became more demanding, often overwhelming. She was poor, and lived alone with only her two rescue dogs for company. When the virus came to Ohio, she stayed indoors, afraid to go to the grocery store and instead lived on fast food — pizza and chicken wings, delivered to her door. Getting medical care — always a challenge when doctors often turn away Medicaid patients and those who don’t keep bankers hours — was a struggle for Herrin. She had trouble finding diabetes supplies and grew frustrated trying. “This is why I hate shitty Medicaid,” she told a friend. “The only places that accept it are a million miles from anywhere and don’t have extended hours.” When the engine on her 2002 Honda Civic gave out last November, she didn’t have money to fix it, so she was unable to drive to a doctor’s office for overdue lab work. Medical records indicated she had no way to get to the office. Ten days before Christmas, she died in her bathroom clutching her phone while looking up symptoms of a heart attack, often a consequence of untreated diabetes.

While the first piece in the Reuters’ trilogy tackled medical underuse, the second story — “Drugmakers pushed aggressive diabetes therapy. Patients paid the price” — investigates medical overuse, a problem easy to overlook in an era when so many struggle to access or afford care. Using diabetes as the poster child for this American phenomenon, the reporters tell a chilling tale of what happens when someone gets too much medicine.

They share the story of a 66-year-old Minnesota man named Ron Carlson who died from chest trauma and hypoglycemia, extremely low blood sugar, which caused him to lose control of his motorcycle in the parking lot of Al’s Center Saloon in Center City, Minnesota two years ago. He had been on his way to a weekly dinner with friends. Hypoglycemia, Reuters told its readers, is a “medical emergency characterized by confusion, dizziness and loss of coordination. Untreated, it can quickly lead to coma and death, and it’s almost always a side effect of diabetes treatment.” His widow Lucy Carlson feared something like this would happen. She told Reuters her husband was obsessed with lowering his A1c score, a measure of average blood sugar over three months. “He really tried hard to be at” an A1c below 7%. “That is what actually killed him,” she said. “I feel like his doctors were trying to help him, but what they were trying wasn’t working. If Ron hadn’t been trying to reach that goal, he could still be here today.”

In part two, the reporting team tells a story about the overmarketing and public acceptance of new drugs and devices, which is becoming all too familiar for patients. They traced the public campaign that began in the early 2000s to convince Americans to push their A1c levels to 7% or lower. Reuters pointed out that the “intense focus on A1c and using drugs to lower it is largely an American phenomenon.” One of the major champions of this approach was the American Diabetes Association (ADA), whose treatment guidelines are considered the gold standard by doctors and patients. The ADA endorsed the lower levels, and embarked on a program to publicly recognize doctors for getting their diabetic patients to reach specific goals.  

Capturing the sweep of their reporting, the trio writes, “diabetes represents a major public health failure in the United States as the prognosis for the burgeoning number of people with the disease has worsened even while spending on new treatments has soared.”

The story of how low levels of A1c became the standard of care raises an important question, said Deborah Nelson, one of the Reuters series’ authors. “Where does the line between public awareness and marketing begin? In the world of drugs and devices it’s often hard to tell. The ADA (American Diabetes Association) had identified the A1c as an important target but with caveats in the fine print,” Nelson explained. “The cautions and caveats were dropped in the press releases for company-sponsored public awareness campaigns,” effectively turning them into propaganda pieces for the medical intervention.

In 2004, 50 mayors from the U.S. Conference of Mayors filmed public service announcements with the goal of encouraging their constituents with diabetes to hit the A1c target of less than 7%. Boston Mayor Thomas Menino spread the word through PSA spots on local TV and radio outlets, and announced in a press release he was “proud to be part of this nationwide effort to move more of our citizens with diabetes toward an A1C<7%.” In 2002, the Congressional Diabetes Caucus, a group of some 300 members of Congress who educate their colleagues and their staffs about the disease and support activities to improve research, education, and treatment on behalf of drug manufacturers, joined the A1c crusade. The caucus, in effect a built-in lobbying organization within Congress, began to sell the “wisdom” of lowering A1c scores.

Dr. Chassin’s framework back in the ’90s also called attention to misuse of health care, which occurs when a patient doesn’t fully benefit from a treatment because of a preventable problem, or when the treatment itself causes harm. Reuter’s third story published last week, “As red flags multiplied, Johnson & Johnson kept quiet on popular diabetes drug,” addresses misuse in medicine through the tale of Invokana, Johnson & Johnson’s blockbuster diabetes drug that debuted in 2013. The reporters found that when the drug was undergoing clinical trials in 2010, researchers learned that some patients had high levels of certain organic compounds in their blood that could lead to ketoacidosis, a life-threatening complication of diabetes. From the story: “Later, as injury reports piled up, J&J executives repeatedly overruled safety concerns raised internally, leaving doctors and patients in the dark about the health risk.”

Dr. Bruce Leslie, who led the company’s safety team and subsequently left, told the reporters, “In my opinion, they wanted to make this safety issue go away because it threatened sales,” and he urged his bosses to “get out in front” of the issue. He recommended that the company alert U.S. and European regulators, “Otherwise, it could come back and bite us in the ass.” Reuters reported J&J took no action as sales continued to pile up, and still do. Last year the drug raked in $795 million even though it now carries warnings about adverse reactions. Reports to the FDA from 2013 to 2020 about adverse events associated with the drug now number 23,000, although the reporters point out such events, which include deaths, do not establish that the drug caused the event.

Readers also meet Veronica Ryan, a 58-year-old Type 2 diabetic from Tennessee who spent 12 days in the hospital suffering from ketoacidosis. Her condition had deteriorated; she struggled to breathe; her kidneys were beginning to shut down; friends were called in to pray. During her hospital stay, the FDA announced it would require Invokana and other drugs in its class to carry warnings about ketoacidosis. “I warn anybody who has diabetes to be cautious of Invokana,” Ryan told reporters. “It was like it was slowly killing me.”

Capturing the sweep of their reporting, the team wrote, “diabetes represents a major public health failure in the United States as the prognosis for the burgeoning number of people with the disease has worsened even while spending on new treatments has soared.”

But the series also shows something else. Namely, that we as health journalists must refocus our reporting from press release coverage of the drug industry to telling the stories of patients who live or die using their drugs. “There are many challenges for people with diabetes,” Terhune said. “It’s not new drugs. It’s more of a system crisis rather than lack of innovation. But there are more incentives for innovation rather than for fixing complicated problems. We keep hearing stories about increasing access to technology,” he told me. “But what those people need is hard to get — food, exercise, more diabetic educators, more focus on primary care.”

None of that is as sexy journalistically as a new drug, even though that drug may be overpriced and ends up killing those who take it.

Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism Digital and a regular contributor to the Remaking Health Care column.