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‘The most stigmatized disease in the world’

The ideas and innovators shaping health care
Feb 23, 2023 View in browser
 
Future Pulse

By Erin Schumaker, Ruth Reader and Ben Leonard

CHECKUP

In this Monday, Dec. 16, 2019 photo, Dr. Neil Floch, second from left, performs gastric bypass surgery laparoscopically, using monitors to guide him at Nuvance Health's hospital in Norwalk, Conn. Obesity surgery is becoming a more common way to lose weight, and so is the likelihood of patients getting a second surgery. In 2019, an estimated 15% of all obesity surgeries in the U.S. came after a previous procedure, up from 6% in 2011, according to a   surgeons' group. (AP Photo/Kathy Young)

The American Academy of Pediatrics now recommends obesity surgery for some children. | AP

The backlash was swift following the American Academy of Pediatrics release of its first new guidance for treating childhood obesity in 15 years.

In addition to exercise, nutrition support and behavioral therapy, the pediatricians’ recommendations included more aggressive interventions, such as prescription drugs and weight-loss surgery for adolescents.

The surgery and medication recommendations struck a nerve. Readers left nearly 800 comments in response to a New York Times article on the update. Some comments boiled down to a familiar perspective: Kids today are coddled. They need to exercise more and eat less junk food.

Obesity researchers told Erin that viewpoint is facile: “It’s the most stigmatized disease in the world,” said Justin Ryder, vice chair of research in the surgery department at Lurie Children’s Hospital of Chicago, who wasn’t involved in developing the new guidelines. “In America, we view obesity as a personal behavior problem and not as a disease.”

Stigma is baked into the language we use to talk about obesity, those researchers explained. In fact, when Erin talked with Aaron Kelly, co-director of the Center for Pediatric Obesity Medicine at the University of Minnesota, he corrected her when she used the term “weight-loss drugs” instead of the preferred “anti-obesity medication.”

The latter phrasing more closely aligns with how people talk about drugs for other diseases, Kelly said, such as anti-hypertensive and anti-diabetic drugs, and it avoids an association with cosmetic procedures.

“That’s on us as a scientific community, to educate the public,” Ryder said, adding, “We have these treatments available. We need to get them to the 7 million kids with severe obesity.”

Kelly framed that problem as an opportunity. “We have tools. Now we need to find out how to deploy them.”

When the bill arrives: It’s almost impossible to get insurance companies to cover medication or surgery for kids younger than 18 even when doctors and parents agree to move forward with such interventions for a child who’s clinically eligible, Kelly said.

“If the health care providers and families work hard enough, it’s a war of attrition. Fight and fight and appeal and appeal,” Kelly said. “Typically, mostly it will be covered, but the insurance companies can make it extremely difficult to where many families and providers will sometimes just give up on trying.”

For families on Medicaid, the fight can be even more challenging.

“In addition to variation from state to state in what’s covered by Medicaid, there’s also variation within a state across different doctors,” said Timothy Waidmann, a senior fellow at the Health Policy Center at the Urban Institute in Washington.

Some doctors prescribe anti-obesity drugs off-label. Others don’t.

“That’s one of the complications of even talking about what’s really happening on the ground. The rules are maybe not for everybody,” Waidmann said.

Still, Minnesota recently changed state law to cover medication for children on Medicaid — a change that Ryder lobbied for.

The kids on medical assistance who need treatment the most have the least access, Ryder explained. "It becomes an equity issue,” he said.

But Waidmann is unconvinced that the American Academy of Pediatrics’ updated guidelines alone will change states’ coverage decisions. “There’s a concern for the cost,” he said. “That’s often how states make decisions about covering new classes of treatments.”

 

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This is where we explore the ideas and innovators shaping health care.

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Share any thoughts, news, tips and feedback with Ben Leonard at bleonard@politico.com, Ruth Reader at rreader@politico.com, Carmen Paun at cpaun@politico.com or Erin Schumaker at eschumaker@politico.com.

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Today on our Pulse Check podcast, your host Ruth talks with Megan R. Wilson about the growing calls in Congress for legislation targeting the pricing practices of companies that manage prescription drug plans for insurers. Megan explains what's in the bills and how the pharmacy benefit managers are fighting back.

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WASHINGTON WATCH

WASHINGTON, DC - DECEMBER 08: Senator Edward Markey (D-MA) speaks during a press conference held by airport workers and members of SEIU to ask congress to pass the

Sen. Ed Markey (D-Mass.) calls the doubling of kids' screen time during the pandemic "extraordinary." | Getty Images for SEIU

Sen. Ed Markey (D-Mass.) and Rep. Jamie Raskin (D-Md.) want the National Institutes of Health to get moving on studying the impacts of screen time, social media and virtual reality on children’s health.

Congress passed their bill directing NIH to study the issue, and providing $15 million to do it, in the fiscal 2023 appropriations law.

In a letter to NIH Acting Director Lawrence Tabak, Markey and Raskin detailed changes in children’s habits during the Covid pandemic, a doubling in daily screen time to 7.7 hours, along with massive increases in messaging, and smartphone and virtual reality use.

“Social media and new technologies are affecting our children in ways we don’t yet fully understand, and we must do more to protect them from online harms,” they wrote.

The NIH said it received the memo and is working on a response.

Already, there has been a flurry of activity on Capitol Hill this year to investigate internet harms. Members of Congress have held multiple hearings concerning how tech platforms are allegedly contributing to the fentanyl crisis, rising youth mental illness, and child sex trafficking.

Last week, Sen. Dick Durbin (D-Ill.) introduced the Stop Child Sexual Abuse Material Act, which would require tech companies to remove such content upon request and penalize them if they don’t. Meanwhile, Sen. Josh Hawley (R-Mo.) has proposed a bill that would ban social media for children under 16 years and make tech companies responsible for verifying the age of their users.

 

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THE REGULATORS

A doctor and nurse confer inside a room used for flu patients.

CMS has fined two Northside hospitals in Georgia for failing to comply with price transparency rules. | Robert Ray/AP Photo

Hospitals that haven’t complied with price transparency regulations are facing Biden administration scrutiny.

Most haven’t posted their prices, as the Centers for Medicare and Medicaid Services mandated in a rule that took effect in January 2021, according to a report this month from advocacy group Patient Rights Advocate.

The consumer group found only a quarter of hospitals were in full compliance.

The regulations require hospitals to disclose what they charge for services and medical products in a machine-readable, consumer-friendly format with the aim of helping patients shop around.

CMS officials Meena Seshamani and Douglas Jacobs wrote in Health Affairs this month that the agency will take “aggressive” further steps to find hospitals that have “failed entirely to post files.”

The agency seeks to reduce the time hospitals have to comply after submitting a corrective action plan, Seshamani and Jacobs said.

“Even as we recognize the progress that has been made to date, we are aware of how much work many hospitals must still do,” they wrote.

At the same time, the CMS officials suggest hospitals aren’t as recalcitrant as Patient Rights Advocate alleged.

Seshamani and Jacobs said at least 30 percent of hospitals aren’t fully compliant and CMS has sent nearly 500 warning notices and requested more than 230 corrective action plans since 2021. The agency has issued two penalties so far — one for $883,180 and another for $214,320 — to subsidiaries of the same Georgia-based system, Northside Hospital.

 

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