The Diabetes Cure That Most Insurance Companies Won't Pay for

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Illustration: Chelsea Beck (Gizmodo)

For 15 years, Erez Benari’s struggle with his type 2 diabetes had been a losing one. A software engineer at Microsoft in Seattle, Washington, Benari had stuck to a restrictive diet that kept him off most carbs, along with regular insulin shots. But still, his high blood sugar levels never dropped, while his health continued to decline. In 2013, the then 39-year-old Benari suffered a heart attack.

Three years later though, in May 2016, Benari received a procedure known as a gastric bypass. The laparoscopic surgery soon gave him something few of the 30 million diabetic Americans ever have—a life free of insulin therapy and other medications.

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“My diabetes went into remission basically immediately, almost that same day. And I’ve been off insulin for about 8 months now,” Benari told Gizmodo in February. “It’s not only improved my health, but my mental state, because I don’t have to fear death all the time.”

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At first glance, Benari’s decision to get a bypass isn’t that strange. The American Society for Metabolic & Bariatric Surgery estimates that nearly 200,000 Americans annually get a form of what’s referred to as either weight loss or bariatric surgery. But Benari, now 44, was a very unusual patient in one clear way: He wasn’t obese.

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Benari doesn’t want to remain an outlier, though. And perhaps surprisingly, many doctors and surgeons are starting to agree that surgery should be considered more than a last-resort remedy for weight loss. Instead, it should be seen as a crucial aspect of diabetes care, and quite possibly the best tool we have against the chronic, often worsening condition.

“People don’t realize there’s a cure for diabetes out there,” Vivek Kumbhari, director of bariatric endoscopy at Johns Hopkins Medicine, told Gizmodo. “We’re just not taking it.”

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The first bariatric surgeries were performed in the 1960s, following the discovery that removing parts of a diseased gut quickly led to weight loss in dogs, along with unfortunate consequences like malnutrition. In the years since, though, doctors have created safer and less invasive, if often still radical, procedures.

The gastric bypass that Benari got, for instance, resculpts the digestive system. Surgeons seal off a large part of the stomach using staples, leaving behind a small upper pouch, while rerouting part of the small intestine to the new pouch, bypassing the rest. The net result is that less food can fit in the stomach, and there’s much less time for that food to be turned into calories before it exits the body. The vertical sleeve gastrectomy, the most popular surgery in recent years, only tinkers with the stomach, using staples to turn it into a small banana-shaped organ. (There are less permanent procedures, such as the lap band, but these have fallen out of favor due to their ineffectiveness).

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These surgeries, even today, come with significant side effects. People have to be vigilant about getting their needed nutrients, since many aren’t as easily absorbed through food anymore. Other substances are too easily absorbed by the body, particularly drugs like alcohol. This vulnerability can then lead to alcohol abuse and may even help explain the slightly higher rates of suicide and self-harm seen in patients soon after surgery. Also distressing is that an estimated one of every 10 patients will fail to lose weight or regain the weight back in the long term, while others will require additional operations to fix complications like stomach leakages.

For all these risks, bariatric surgery remains the only reliable way to help people lose and keep off a large amount of weight. Patients lose an average of 30 percent of their original weight, mostly within the first year, while the risk and severity of obesity-related health problems drop off accordingly.

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In 1991, the National Institutes of Health issued a consensus statement, cautiously recommending surgery as a treatment for people living with morbid obesity, meaning they have a body mass index, or BMI, over 40. For people who have health complications connected to obesity, such as type 2 diabetes, the limit goes down to a BMI of 35. Relying on these guidelines, insurance companies and public payers like Medicaid and Medicare typically only cover surgery for people living with diabetes who fall into that category.

Benari’s BMI before he underwent the surgery hovered around 28, which made him modestly overweight but not obese.

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People with diabetes are unable to control the level of sugar in their blood, usually due to a breakdown in how their bodies use the hormone insulin. It’s not completely clear how obesity can contribute to diabetes, but it is known that excess weight is associated with chronic inflammation and a dysfunctional metabolism. And these factors in turn make it easier for someone to stop responding to the presence of insulin as easily as they once did. So by using surgery to help very obese people with diabetes lose weight, the logic goes, you can indirectly treat or prevent the condition. But doctors such as David Cummings, a senior investigator at the University of Washington’s Diabetes & Obesity Center of Excellence, are pushing back against this way of thinking.

For over a decade, Cummings and others have tried to reframe the very concept of bariatric surgery (they prefer “metabolic surgery”). Their work has shown these procedures just don’t change how much food the stomach can fit; they trigger a cascade of metabolic and bodily changes, many of which help people with type 2 diabetes naturally get their blood sugar under control. Some changes even start happening before a patient loses weight, such as higher levels of peptide production in the gut that seem to restore a patient’s sensitivity to insulin.

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“It’s not that weight loss doesn’t play a role,” Cummings said. “It’s just only one player among many.”

In 2015, Cummings organized a conference of experts in diabetes care and research, the 2nd Diabetes Surgery Summit (DSS-II). More than 40 experts, two-thirds of whom were non-surgeons, reviewed clinical trials of bariatric surgery used to treat diabetes patients, four of which included patients only mildly obese, meaning a BMI from 30 to 35.

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The review affirmed how effective surgery is at treating diabetes (possibly even type 1 diabetes). Around two-thirds of patients with diabetes experience a full remission soon after surgery, while the rest are often better able to control their blood sugar through diet, exercise and medication. Other studies have shown that diabetics who have surgery outlive those who haven’t. Some longer-term research has suggested that one-third of these successes slide back into having active diabetes after five years, but to a lesser degree than they might have without surgery. By contrast, a 2014 study found that fewer than 2 percent of diabetes patients given standard care experienced any remission within a seven-year span.

In 2016, the 2nd Diabetes Surgery Summit released its own guidelines, arguing that surgery should be widely recommended for moderately obese people with diabetes who haven’t responded well to other treatments. They also agreed it should be considered for mildly obese people. And because of how cost-effective surgery is, especially compared to standard treatment, insurance companies should be willing to foot the bill, it said.

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It was the same endorsement the first Diabetes Surgery Summit, also organized by Cummings in 2007, had made, but the landscape had changed since then. In addition to more accumulated research, this time, their stance was backed by over 50 international professional organizations, including the American Diabetes Association. And while other medical societies and organizations had long backed surgery as an option for diabetes, the DSS-II guidelines are the first meant to guide clinical practice.

“We think the degree of endorsement we got for [the DSS-II guidelines] represent the highest degree of consensus of any clinical practice guidelines ever crafted in medicine or surgery,” Cummings said.

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The guidelines, if widely accepted, would affect up to a quarter of Americans living with diabetes whose BMI is between 30 and 35. Worldwide, the effects would be even greater, since the majority of the 422 million people with diabetes have a BMI lower than 35. For people of Asian descent, the DSS-II agreed surgery could be considered for people down to 27.5 BMI, since many patients of Asian decent develop diabetes at a lower BMI.

Benari, an Ashkenazi Jew, doesn’t fall into that category. But Cummings and other bariatric experts I spoke to said that surgery should be a possible option for any person whose diabetes isn’t improving. Cummings himself is currently working on a clinical trial in India of bariatric patients with BMIs as low as 25. And he expects similar trials will come down the pipeline.

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Even as doctors’ perceptions surrounding surgery for thinner people have changed, though, the major stumbling block, as Benari found out, is getting anyone to pay for it.

The estimated average cost of bariatric surgery is around $15,000, according to a 2017 review. But even these estimates might be underselling it. Benari recalls that his surgery, with expenses before and afterward, was about $35,000 without insurance. The price tag kept him from pursuing the procedure for almost a decade.

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“Obviously I couldn’t gain 40 pounds so I could get surgery—that’d be suicidal. I just held off, trying to not think about it,” he said. “Eventually, through a lot of back and forth, nagging and whining, I convinced [Microsoft’s] HR department to overhaul their policy and allow people in my situation to get the surgery done.”

Benari did initially cover the surgery himself, but he says Microsoft reimbursed him in full. Microsoft declined to respond to a request for comment from Gizmodo regarding its current coverage policy for bariatric surgery.

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Anecdotally, Cummings knows at least one person in the US who got their surgery paid for through their partner’s employer insurance, despite only having a BMI of 31. And he notes that many countries with a robust public health care system have already lowered their BMI limits to mirror the DSS-II guidelines, such as the UK and Saudi Arabia. He also believes that Medicare and Medicaid officials are deliberating whether to adopt the DSS-II guidelines, based on discussions he’s had. “I don’t know how long it’ll take, but we’re crossing our fingers and hoping,” he said.

A representative for the Centers for Medicare and Medicaid Services, however, told Gizmodo the agency “has not received a reconsideration request” to overhaul its coverage of bariatric surgery as of yet. Gizmodo also asked several of the leading insurance companies, such as Anthem, Aetna, and UnitedHealthcare, about any possible revision in their coverage policies. Only Aetna replied, stating it constantly evaluates “new published peer-reviewed studies and medical research when developing our clinical policies.” But the company seemingly has no current plans to roll out any changes.

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“It’s hard getting a bunch of cats to move in the same direction at once,” Cummings said. “So in a practical sense, it’s difficult to make policy changes in insurance coverage in the US compared to countries with national insurance.”

Even as things stand now, there are a lot of people left out in the cold. A 2016 study, for instance, found that only 41,000 people with diabetes annually get bariatric surgery in the US—fewer than 5 percent of the total new cases diagnosed every year. And the longer someone has diabetes, studies have suggested, the less likely they are to go into remission if they eventually get surgery. Getting those numbers up will not only require changing the minds of insurers, but public opinion, too.

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“The field has suffered from a checkered history 20, 30 years ago, when there were operations that were dangerous. But modern metabolic surgery is very safe,” Cummings said. “The risk of dying from a laparoscopic gastric bypass is a little bit less than the risk of dying from having your gallbladder or appendix removed. But we never consider those risky surgeries; they’re totally bread-and-butter procedures.”

There’s also no real worry about overshooting in terms of weight loss, as you might assume, if surgery were more commonly used on thinner people. “If you perform surgery on a lower BMI person, they won’t lose as much weight. The lower you start, the less you lose,” Cummings explained. “But it’s still powerfully anti-diabetic.”

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The fact these improvements can happen independently of weight loss should also signify a shift in how we conceptualize both obesity and diabetes, according to Peter Billings, the Seattle bariatric surgeon who operated on Benari. Billings, a nearly 20-year veteran in the field, has started to perform surgery on other lower-BMI patients similar to Benari, though they often pay out of pocket.

“We traditionally think people are diabetic because they’re overweight. But they’re actually diabetic because of a metabolic process that’s not functioning right, and they’re probably overweight because of that same process,” Billings said.

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Understanding how to better fix these metabolic flaws might allow for emerging, less radical surgeries that can treat diabetes without necessarily having to cause weight loss. Conversely, that knowledge could also help develop a weight loss or diabetes treatment that mimics the effects of bariatric surgery through a pill alone.

For now, Benari understands the resistance some might have about encouraging people to go under the knife. But for him, it’s a choice he wishes more people had the opportunity to make themselves.

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“I’m going to live a better, longer life,” Benari said. “And I want this to be available to others as well.”

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