Patients worry as insurers cut weight-loss drug coverage

PHILADELPHIA — Mara Nissley has a rare disorder that causes her brain to swell as if she has a tumor. Losing weight can help treat the condition, called pseudotumor cerebri. Last year, her doctor recommended she start a popular weight-loss drug in the hopes of alleviating her debilitating headaches and vision problems.

In just a few months, Nissley had lost 20 pounds, and her headaches and vision issues had stopped.

But now, her access to the drug that she credits with changing her life is in question. Citing rising costs, health insurers in the Philadelphia region and around the country are dropping or restricting coverage for some medications in this newer class of drugs, known as GLP-1 agonists. These include Wegovy, the brand name of the drug Nissley takes, and Zepbound.

Area residents like Nissley who have lost coverage in the last few months say that they're unsure now how to afford their medications and worried about losing the health improvements they've attained.

GLP-1 agonists were originally developed to treat diabetes and mimic the effects of the GLP-1 hormone to regulate blood sugar levels. The Food and Drug Administration has approved a number of these drugs under different brand names to treat a host of conditions including obesity, cardiovascular disease, and sleep apnea.

Most of the insurance changes are targeted at drugs used for weight loss. Ozempic, an especially well-known drug of this class, is approved by the FDA to treat diabetes and prevent heart failure and kidney disease complications. It is not approved for weight loss, although it's often prescribed off-label for this purpose. Other drugs, like Wegovy and Zepbound, are approved specifically to encourage weight loss.

But the exorbitant costs — up to $1,400 a dose, well above costs in other countries — have prompted some U.S. insurers to tighten requirements around coverage. Some have blamed the rise in prescriptions for the drugs for causing premiums to rise for their entire customer base.

Doctors and patients who have had success with GLP-1 agonists say that restricting coverage may do more harm than good, cutting off access to a drug that can prevent serious conditions like diabetes and heart disease.

Nissley, 33, of Francisville, said she'd never considered taking a weight loss drug before she learned it could help treat her condition.

"My primary care physician and I are scrambling. If you go off Wegovy, you can gain weight. They've also shown Wegovy can lower blood pressure. If my blood pressure goes up, that could increase the pressure in my brain. So it's not helpful to go off it," Nissley said.

Nissley and several other Philadelphia-area patients who lost coverage for their GLP-1 drugs have also said they didn't receive enough warning before coverage was dropped, leaving them with little or no time to find a new insurance plan or to save to cover the out-of-pocket cost.

"This is such a personal issue for people — it's more than just dollars and cents. It's the real lives of real individuals," said Utibe Essien, a physician and assistant professor at the University of California, Los Angeles who studies inequities in access to pharmaceutical drugs. "I don't know about you, but I'm not typically storing away $10,000 for a medication that was supposed to be covered."

'Seeing who's going to blink first'

The reasons behind the high prices of drugs like Wegovy and Ozempic are complex. The relative lack of market competition, exclusive patents, and the United States' byzantine drug pricing system can all contribute to high prices.

As GLP-1 prescriptions have risen — along with potential for the drugs — so have insurers' restrictions on their coverage.

Highmark, a leading insurer in the Philadelphia region, placed stricter prescribing requirements last summer on GLP-1 drugs in Pennsylvania, due to limited research on the drugs' long-term benefits, patients taking them inconsistently, and an unreliable supply of these in-demand medications.

In January, Independence Blue Cross, the area's largest insurer, stopped covering any weight loss drugs when they are prescribed solely to lose weight, citing high costs. (The decision does not apply to GLP-1 agonists prescribed to treat other FDA-approved conditions.)

The company encouraged people who lost coverage to talk to their doctors about their options and to take advantage of other IBX benefits that support weight loss, like behavioral health and nutritional counseling, reimbursement for gym memberships, and bariatric surgery.

Pennsylvania is among several states whose Medicaid plans also restrict coverage of the drugs for those relying on the government's health coverage for low-income families and people with disabilities. This month, state health officials told legislators that GLP-1 agonist coverage could add $1 billion in new costs to the state's Medicaid spending this year, WESA reported.

While some people can pay out of pocket, the most vulnerable patients who need GLP-1 agonists will likely not be able to afford them without insurance, Essien said. People who make lower incomes are also at a higher risk for conditions like obesity and diabetes and have less access to healthy food and opportunities for physical activity.

"This is a transformational moment in science, but we're going to see widening disparities, because the people who have access to these medications are not the same people who have the highest risk of conditions like obesity and diabetes," he said.

Many of David Sarwer's patients on GLP-1 drugs at Temple University's Center for Obesity Research and Education have already tried other methods of losing weight. He's frustrated to see their difficulties accessing the medication now.

"The clinical care community is saying we want more access to these medications, because every week that goes by, we see another story talking about the benefits," said Sarwer, the center's director. "And the insurance companies and the pharmaceutical companies are in a showdown, staring at each other, seeing who's going to blink first."

Notifying patients about coverage changes

Some patients said IBX gave them little warning about dropping their coverage.

Rich Venezia, 35, of Center City, lost 20 pounds in three months after starting Zepbound last fall.

He said he was only notified of IBX's decision in late December — too late to change to a new plan that covers the drug.

"I had researched quite a bit what made the most sense to me, in part due to what prescription drug coverage would look like," he said. "I essentially was robbed of the decision that I could make as an individual consumer."

Last fall, Nissley was laid off from her job, and in early December searched for a new plan on Pennie, the state health insurance marketplace. She made sure to ask a health-care navigator whether IBX would cover Wegovy, and was assured it would. Pennie declined to comment on the exchange.

Less than a month later, Nissley said, she received a letter from IBX saying that her insurance would not cover Wegovy. Pseudotumor cerebri is not among the conditions approved by the FDA for treatment with GLP-1 agonists. Since losing weight can treat the brain disorder, her physician had prescribed Wegovy only for weight loss.

An IBX spokesperson said that if an additional purpose for a person's medication was not identified on insurance forms, then the company "would typically have no way of knowing it." A physician can resubmit a request for coverage, a spokesperson said.

The company said it told group insurance plans, in-network IBX doctors, and insurance brokers about the coverage change in August. IBX informed health-care navigators about the decision in October, and sent letters to patients with individual plans starting in November.

Nissley and Venezia were not notified of their plan changes until later in the year because their IBX coverage for their medications started after Sept. 4, 2024, the cutoff date for notifying members earlier, the company spokesperson said.

Nissley said that she's still trying to figure out how she'll pay for Wegovy — without insurance coverage, it costs $650 a dose. She's considering taking a cheaper formulation that costs about $350 to $400.

She said navigating the situation has been stressful.

"Being unemployed and having to budget, I was like, 'At least my health was managed. I can get the drugs I need and I can focus on the job search,'" she said. "And now I'm expending all this energy on this problem."