Patients hate 'forever' drugs. Is there a difference with Wegovy?

But that resistance may be overcome by the blockbuster obesity drugs Wegovy and Zepbound, which have astounded the world with the way they help people lose weight and keep it off. Though it’s still early days, and there is a paucity of data on compliance with the new drugs, doctors say they are noticing another astounding effect: Patients seem to take them faithfully, week in and week out.

Some patients may have to get over an initial reluctance to start. A national survey showed that when people were told they would gain weight back if they stopped taking the drugs, most lost interest in starting them.

In one small study, patients stopped refilling prescriptions for months at a time, perhaps because of side effects, lack of availability, or insurance and cost issues.

But anecdotally, doctors and patients say, those who begin taking the drugs are continuing.

“I don’t intend to ever stop taking this medicine,” said Kimberly DelRosso of Pembroke, Massachusetts, who takes Wegovy.

She has never forgotten to take her weekly injection. By contrast, she says, she often neglected to take the blood pressure pills she was prescribed when she weighed more. (Now, after losing weight with Wegovy, she no longer needs them.)

So far, doctors report that like DelRosso, most of their patients intend to take the obesity drugs forever, and many are thrilled when they stop needing other drugs.

Dr. David Cummings, a professor of medicine at the University of Washington and the director of a weight management program at the VA Puget Sound Health Care System, records his patients’ experiences with Wegovy and the diabetes drug Ozempic. So far he has prescribed the drugs to about 1,000 patients. At most 5% stopped because of side effects, he said. Others stopped because their insurance no longer covered their drug or because they couldn’t find a pharmacy that had it in stock, reflecting persistent shortages of the drugs.

But those who stop generally do not do so voluntarily, he said. Other doctors who prescribe Wegovy agreed.

“Compliance is exceptional,” said Dr. Diana Thiara, medical director of the weight management program at the University of California, San Francisco. “People take it. They ask for refills. They take it on trips.”

An epidemic of nonadherenceThere’s a price to pay for neglecting to take prescription drugs. An astonishing 40% to 50% of people who are prescribed medicines for chronic conditions like high blood pressure or diabetes fail to take them — and incur at least $100 billion in preventable medical costs annually as a result. This lack of compliance is estimated to lead to at least 100,000 preventable deaths each year.

Even a heart attack may not be enough to scare people into taking the current arsenal of cardiac drugs, shown to prevent heart disease deaths. Some studies show that just half of people who had heart attacks were still taking drugs to protect their heart two years later.

“These patients have seen the bright lights, ridden the ambulance, gotten rescue PCI, given their families secondary heart attacks, glimpsed the Pearly Gates, but still don’t seem to take their statins and beta blockers,” said Amitabh Chandra, a professor of public policy and business administration at Harvard University.

Even doctors stop taking their meds, defying the hypothesis that people do so because they don’t really understand their importance.

And while cost plays a role, at least one study found that even when drugs are free, adherence can be abysmal.

One reason seems to be a sort of ingrained reluctance to take something that reminds people every day that they are sick, or so many patients might perceive it. Especially with what experts call “forever” drugs, taking them each day makes some patients feel abnormal.

“People think they are doing fine, so they don’t need the medicine,” said Corrine Voils, a social psychologist at the University of Wisconsin who studies medicine compliance. “But the medicine is what is keeping them well.”

Jalpa A. Doshi, a professor of medicine at the University of Pennsylvania’s Perelman School of Medicine, said patients make their own personal value judgments: “The medicine has side effects, requires copays, and the act of taking a daily pill reminds me that I’m sick. But I don’t have symptoms — I don’t see my high blood pressure or high cholesterol.”

“And what are the benefits?” she added. “I really can’t see the benefits. I could eat less salt and fatty food and do more walking or exercise,” instead of taking these drugs.

These assessments that patients do in their heads “make it much easier to stop,” Doshi said.

That describes Mark Anthony Walker, 61, of Dublin, California, whose experience with heart disease is shadowed by a troubling family history — his father died of a massive heart attack at age 47, his mother at age 48.

When he was 26, Walker had a cholesterol level of 360.

“I was terrified,” he said.

He has taken statins on and off ever since and is taking one now. But he does not plan to take it forever. He has come to the conclusion that his brain needs cholesterol. As for taking a drug for the rest of his life, “I am completely against it,” he said.

Instead, he believes he will be able to control his heart disease — even reverse it — with a rigorous diet, exercise and vitamins.

Walker’s cardiologist, Dr. David J. Maron, the director of preventive cardiology at Stanford University, gently encourages him and others like him to take their medicines. But, as doctors know, if they storm in guns blazing, their patients will just go elsewhere.

Less stigma, less shameSo what might be making the obesity drugs different? For one, while doctors are usually the ones to recommend drugs like statins or blood pressure drugs, patients are often asking doctors for obesity drugs. Many have spent a lifetime trying any diet and exercise program they could find, and every time they lost weight, they gained it back again.

Also, people who start taking the new obesity drugs can’t easily hide if they stop taking them: The weight they lost may come back, along with the stigma and shame and self-blame that often accompanies obesity. That makes these drugs very different from most others.

“You don’t get a big sign on your chest saying, ‘Blood pressure medication stopped,’” said Dr. Walid Gellad, a professor of medicine at the University of Pittsburgh who studies medication adherence.

On the minus side, though, the obesity drugs are expensive and often require doctors to fill out burdensome preauthorization forms for insurance. The drugs have consistently been in short supply around the country. Those impediments can make them difficult to get.

Other drawbacks of the drugs include side effects like nausea and gastrointestinal issues, as well as the way they are administered — patients have to inject themselves with the drugs once a week.

In a study at the Cleveland Clinic, Hamlet Gasoyan and his colleagues examined the electronic health records of 402 patients at sites in Ohio and Florida who were taking Wegovy or Ozempic for obesity. They found that only 161, or 40%, had continually refilled their prescriptions over the year. Side effects, availability, or insurance and cost issues may have played a part.

But there’s a reason patients are willing to call dozens of pharmacies looking for the drugs and most faithfully inject themselves every week: Without obesity, they feel that they look better and are viewed differently. No longer are they shunned or shamed. No longer do people stare at their grocery cart or comment when they eat a bowl of ice cream. The embarrassment and self-blame and never-ending stigma of obesity are gone.

That’s a big factor for DelRosso.

People with obesity “are treated differently,” she said, adding: “It’s just awful how people discount you because you are heavy.”

But she also delights in the health effects. She no longer has sleep apnea or high blood pressure, and her blood sugar, which was edging toward the diabetic range, has fallen.

“I no longer have to take any meds,” she said.

Except, of course, Wegovy.