Weight loss drugs changed their lives. Then they lost coverage

The letter came in June. Mindy McCormick, 67, read that her insurer would soon stop covering the weight loss drug Wegovy, which she had been taking for more than two years.

What? she remembers thinking. They're just going to take it away from me?

She sent photos of the letter to her physician, Dr. Andrew Kraftson. His inbox was full of panicked emails from patients. Nearly 9,000 people across the state had received similar letters from Blue Cross Blue Shield of Michigan.

Many of Kraftson's patients asked the same question as McCormick: "What are we going to do now?"

Over the past few months, Blue Cross Blue Shield of Michigan, the state's largest insurer, has scaled back on coverage of the weight-loss drugs Wegovy, Zepbound and Saxenda.

These drugs are life-changing - in some people's minds, lifesaving. But they can cost over $1,000 a month without insurance. The decision in Michigan reflects a shift underway nationwide, as insurers and employers pull back on paying for weight-loss drugs. This year, North Carolina and West Virginia have both restricted coverage for the medications for state employees. Some large private employers have also dropped coverage.

Blue Cross Blue Shield of Michigan, like many other plans, will continue to cover similar drugs that treat people with diabetes, like Ozempic.

Dr. James Grant, the chief medical officer at Blue Cross Blue Shield of Michigan, said the insurer said it felt "forced" to reduce coverage of the new weight loss drugs for some members because of their "exorbitant prices."

"Did we make this decision easily or flippantly? No. We struggled with it," Grant said.

Patients are supposed to take these medications for the rest of their lives. There's no clear guidance for going off them, but there are clear risks. Suddenly stopping the drugs can lead patients to regain weight and worsen risk factors for diabetes and heart issues, according to a new standards of care report the American Diabetes Association issued this month.

In response to a request for comment on its prices and insurance coverage, Eli Lilly, which makes the weight loss drug Zepbound, said that insurers' decision to not cover weight loss drugs could lead to significant long-term health effects for people with obesity, and raise their risk for "premature mortality." Novo Nordisk, which makes Wegovy, said that denying coverage "reinforces the misconception that obesity is a choice," and that the company has a "longstanding commitment to patient access and affordability."

The challenge now is figuring out what comes next for those who can no longer afford the drugs. Some doctors have overbooked their schedules to see as many patients as possible before their coverage is cut off. Dr. Jonathan Gabison, a physician in Michigan Medicine's Weight Navigation Program, has helped some patients to stretch out their doses, and has switched others to older drugs. "I don't know what to do," he said.

"There is zero data" to guide these decisions, he added. "Zero."

‘That hope is gone'

Thousands of patients lost coverage this summer. Since Aug. 1, Blue Cross Blue Shield of Michigan has required that many patients have a body mass index of 35 or higher in order to get coverage for newer weight loss drugs like Wegovy.

Even if people met that new criteria, Blue Cross Blue Shield imposed other restrictions, including that some patients needed to prove they had participated in a lifestyle modification program to get coverage between August and January.

Stacey Pakela, 60, scraped together six months of fitness logs. She documented her twice-weekly personal training sessions and every time she closed the rings on her Apple Watch. She showed that she lost 25 pounds over 10 months on Wegovy.

Still, Blue Cross pulled coverage for the drug in August.

"This is just really wrong," Pakela recalled telling a Blue Cross employee over the phone.

"I could understand if I couldn't prove that this was working, that there was no weight loss, but this is working," she remembered saying. "This is the first thing that's worked for me."

When she was on the drug, eating felt effortless: she could stop when she was full. But now that she's off the medicine, she constantly thinks about food again. She calculates carefully. At the start of each day, she maps out a meal plan. If her family goes to a restaurant last minute, she often stays home.

Kraftson suggested she try Qsymia, an older anti-obesity drug, but Pakela was reluctant to take it after she read that some patients on the drug developed vision problems. Still, she is scared about regaining weight, and the long-term toll if she does - whether she will be able to walk comfortably in 10 years or play with future grandchildren.

"It just felt like there was finally some hope," Pakela said. "And now, that hope is gone."

Several doctors said they have felt like therapists, comforting patients about the coverage change as they try to figure out next steps. Kraftson makes sure to always know where the tissues are. At least one of his patients cries every day.

"You had people who were almost homebound and were able to go out in the community, go to the gym, enjoy more quality time with their kids," said Dr. Amal Othman, an assistant professor at Michigan Medicine. "It's scary, to feel like you can go back this way."

Doctors do have other options to offer patients, beyond medications: For some, diet and exercise changes can help keep off weight. Kraftson has started encouraging more patients to consider bariatric surgery. He tells patients: "No one can take surgery away from you."

Still, some doubt they can truly replace the drugs.

McCormick lost coverage over the summer. She started metformin, a diabetes medication that can sometimes help people lose weight. "That didn't do anything," she said. She is also now taking phentermine, an appetite suppressant. But she worries that nothing will work as well as Wegovy.

"My life has been wonderful," she said. "And all of a sudden - boom! They pull it out from under me."

Panic and planning

Every day for months, Beckie Hartman thought about the fact that she would soon lose coverage for Wegovy. She thought about it when she packed her lunch in the mornings. She thought about it when she volunteered at the concession stand at a local school, surrounded by hot dogs and Snickers and chips.

Hartman, 45, was scared that "food noise" would return - the incessant thoughts about eating that used to stream through her mind like ticker tape.

She worries her asthma will get worse if she regains weight, or that she'll develop cardiovascular problems, which run in her family. To her, cutting off access to Wegovy feels like taking insulin from a diabetic. Hartman herself has prediabetes. Without the drug, she fears her blood sugar could rise. At least then, she said, she might be able to qualify for Ozempic.

"It's like well, if I get unhealthy, maybe they'll cover it," she said.

On Wegovy, she had lost 40 pounds in a year. The drug seemed to change her brain, stripping away any impulse to eat more. For the first time, she felt in control.

That is, until a few weeks ago, when she, too, lost coverage.

Kraftson has started her back on phentermine. The drug dries out her mouth. Her heart races, and she struggles to sleep. More frustrating, though, is that she cannot stop thinking about eating, at a time when her house is stocked with holiday sweets. She has stopped cooking meals for her family, so she can stay away from food.

She tried to monitor her weight. Every day, the scale ticked up. She stopped stepping on it.

"I can't look at those numbers right now," she said. "It makes me feel even worse about myself."

This article originally appeared in The New York Times.