When she started taking the weight loss medication Wegovy in November 2021, Macarena Khoury had a BMI of 37, and she spent most of her day thinking about food.
“All the time. All day. Like, ‘I’m hungry. I need to eat this. Why did I eat this?’ or ‘OK, I’m not going to eat this, it has too many calories,’ ” said Khoury, who runs her own interior design business.
Khoury, 37, moved to the US from Chile when she married her husband in 2015. The change in food, and especially the larger portions, led her to gain 30 pounds. Then she had four pregnancies, gaining more weight each time.
Her thoughts became dominated by mental chatter about food, she said, something Wegovy users shorthand on social media as “food noise.”
“Wegovy took away all those thoughts,” she said. “I was completely free.”
She says she didn’t make big changes to what she ate, just ate a lot less. She also continued to do regular Peloton bike rides.
In January of 2022, Khoury made it to a place people in online weight loss support groups call Onederland: when they hit a weight on the scale that starts with the number one. And she kept going – dropping a total of 80 pounds in 10 months, eventually hitting a low weight of 149 pounds in September of 2022.
She posted triumphant photos of herself smiling in a bright yellow tank top and black shorts. The top was hanging loose across her stomach where it had stretched tight months earlier.
“I felt so good. I felt like I finally had my life back,” Khoury said.
Then her husband switched jobs. “We had to switch insurances, and the new one wouldn’t cover any kind of weight loss medication,” she said.
Wegovy can cost more than $1,300 a month without insurance, and Khoury couldn’t afford it.
Since stopping the medication in September 2022, she has regained 40 pounds.
“You start regaining all the hunger back. You feel you haven’t eaten in a year, which is actually pretty accurate,” Khoury said with a laugh.
More and more people are finding themselves in the same tough situation: They’ve been successful on powerful new drugs for weight loss, but then they lose access to them.
Losing access to a life-changing drug
Most employer insurance plans don’t cover popular GLP-1 medications like Wegovy and Zepbound — or any other medications for weight loss, for that matter. Medicare also doesn’t pay for weight loss medications.
According to a survey conducted in October 2023 by the International Foundation of Employee Benefit Plans and another by the employee research firm Savanta, only about 1 in 4 employers covered GLP-1 drugs for weight loss in 2023, although both indicate that more employers — as many as 43% — are planning to offer them as part of their health plans this year.
At the same time, some employers who were part of the first wave of companies to cover the drugs are now narrowing the criteria people need to meet to qualify for coverage.
The International Foundation of Employee Benefit Plans survey shows that roughly 30% of employers who currently cover the medication for weight loss say they’re considering restricting that coverage to control costs.
The main ways they’re doing this are through what insurance companies call utilization management, which means looking at each person’s eligibility on a case-by-case basis or by requiring that they try other therapies such as lifestyle management or older weight loss medications before they qualify for GLP-1 drugs.
“It’s very common for insurance companies to create these hoops that patients have to jump through,” said Dr. Dan Azagury, medical director of the Stanford Bariatric and Metabolic Interdisciplinary Clinic.
Azagury said patients may be required to try a cheaper drug that’s not expected to be effective and known to cause side effects like diarrhea.
“Obviously, patients are going to discontinue it. They’re like, ‘I’m not going to take this for another three months,’” Azagury said. “Then the insurance will say, ‘well, you haven’t been compliant with your first-line treatments, so we’re not going to cover the more expensive drugs.’ ”
In other cases, he says his clinic has recently had a couple of patients who were denied coverage for their GLP-1 medications because those drugs worked for them.
“We’ve had a patient who started at a BMI of 33, and now they’re at a normal BMI of 22, and the insurance is saying, ‘Well, now you have a normal BMI, so you’re not covered,’ ” Azagury said.
Azagury said he would almost understand if an insurance company declined coverage if the new medications didn’t work — and they don’t for everyone. But cutting people off after they’ve had success is “completely ridiculous and appalling.”
Studies that have followed patients after they discontinue GLP-1 drugs have found that most regain weight.
Having people stop using drugs that have helped them lose weight would be like having someone stop their blood pressure medication after it brought their blood pressure down, Azagury says, or telling someone who’s diabetic, but who has normalized their blood sugar with treatment, to stop their medications and wait for their blood sugar to go back up.
“It’s completely shortsighted. It’s the contrary of any treatment goal,” he said.
Cost savings that comes down the road
Economists say that, yes, the medications are expensive, but they could also lead to substantial cost savings if they prevent other serious medical conditions like heart disease, diabetes and arthritis. A recent study found that the GLP-1 drug semaglutide, for example, could reduce the risk of cardiovascular deaths, heart attacks and strokes in people who took it to lose weight.
One analysis, by the Schaeffer Center for Health Policy and Economics at the University of Southern California, estimated that Medicare could save nearly $175 billion within 10 years if it covered the new GLP-1 weight loss drugs. It also found that US society as a whole could see as much as $1 trillion in savings over 10 years if all eligible Americans were treated with them.
Researchers point out that neither of those estimates accounts for the costs of the medications, since that has been uncertain and subject to change.
Still, if treating obesity could lead to such big cost offsets, why aren’t more insurers jumping to cover the new drugs?
Dr. Bryan Tysinger, a research assistant professor at USC who worked on the analysis, said there are two reasons.
“The first is that the long-term effects of these drugs aren’t fully known yet,” he said. “If people do need to stay on these drugs long-term, are there long-term health benefits? We just don’t know.”
The second reason is what Tysinger calls a misalignment of incentives.
An insurer covering a 45-year-old, for example, might shoulder the cost of weight lost medications for a decade or so, but sooner or later, those employees will retire, and their health care costs shift to Medicare.
Medicare would also then reap the benefits of preventing their obesity.
“So maybe investing in prevention isn’t worth as much to you as it is to Medicare,” he says.
Insurers narrow eligibility for new weight loss medications
Dr. Kimberly Gudzune, the medical director for the American Board of Obesity Medicine who treats people with obesity and diabetes at Johns Hopkins, said her practice has been getting so many new requests for time-intensive prior authorizations from insurance companies that it had to hire an additional staff member to help.
“We actually hired a pharmacy tech part time in order to help us process through all of the prior authorizations that are needed because the volume is just so astronomical,” she said.
The documentation that’s been required to help her patients keep their coverage has also become a moving target. There were periods last year where the requirements for maintaining coverage changed from week to week.
Gudzune said she understands that insurers need to control costs, but the requirements she’s seeing seem reactionary and not based on what research shows about the treatment of obesity.
Sometimes she’s able help a patient appeal an insurance denial, but sometimes her efforts aren’t successful.
“There are a lot of tough discussions that are being had in clinical practice about ‘where do we go from here?’ and oftentimes we don’t really know yet,” she said.
Searching for better options
Khoury tried to stay on Wegovy. Her new insurance company pays for a medicine with the same active ingredient if it is used to treat diabetes, and Khoury is insulin-resistant, which can be a prelude to type 2 diabetes. But she doesn’t meet the criteria for diabetes, so the insurance company said no.
She tried taking part-time jobs to afford the out-of-pocket cost, but it was tough with four kids.
She tried getting less-expensive versions of the medications from Canada but ultimately turned to a compounding pharmacy in New York to buy a custom-made version of her old weight loss drug — semaglutide — that has some B vitamins mixed in.
The US Food and Drug Administration allowed some pharmacies to compound — or custom-mix — versions of two GLP-1 medications, semaglutide and tirzepatide, after those drugs went into shortage in 2022.
But the agency has also warned that it has received reports of adverse events in some people who used compounded semaglutide. It says the active ingredients in compounded versions may not be the same as in the approved versions of the drugs.
Drugmakers Novo Nordisk and Eli Lilly said their own tests have found impurities and inaccurate strengths of inactive ingredients in some compounded versions of these medications. In an open letter posted online last week, Lilly said a compounded product “was actually nothing more than sugar alcohol.”
Khoury says she’s been using compounded semaglutide for about a month. She hasn’t lost any weight, but she has quit smoking, she says. Many users have reported that in addition to quelling food cravings, GLP-1 medications can cut addictions to other substances.
Her out-of-pocket costs rose from $20 a month to $350 per month, which is still pricey but manageable for the time being.
The extra cost is worth it to her. But she hopes one day, the drug won’t take such a big bite out of the family’s budget.
“I’m such a huge advocate for this medication, because it really changed my life,” Khoury said.