'Life-changing' or 'double-edged sword'? Kentucky leads US in use of new weight-loss drugs

CYNTHIANA — Jenny Lynn Hatter knows how to lose weight. Keeping it off proves harder.

She has lost — and regained — 100 pounds at least four times.

She's tried Nutrisystem, Jenny Craig and Weight Watchers. She's undergone a gastric band and gastric sleeve.

Her sleeve experience was even featured as promotional material for the weight-loss program at Saint Joseph Hospital in Lexington.

But in 2020, she started to again gain weight — something that continued into 2023. That’s when Hatter asked her doctors about the new class of weight-loss and diabetes drugs that include Ozempic, Wegovy, Zepbound and Mounjaro.

The injectable medications, called glucagon-like peptide-1s (GLP-1s), mimic a gut hormone known to decrease appetite.

The drugs had become so popular that they were rarely available in local pharmacies, so she bought an off-brand, non-FDA-approved version of tirzepatide (the active ingredient in Zepbound and Mounjaro) that costs $580 every six weeks out-of-pocket.

So far, it’s worked: Hatter lost 62 pounds in six months. But with so many unanswered questions about the long-term effects of the weight-loss drugs, and with Hatter having gone through these cycles before, she’s terrified this time will be the same.

“I feel like a lab rat, and I’m currently sitting in the petri dish hoping it all goes right,” said Hatter, 52, the assistant superintendent of Harrison County Public Schools.

About 1.3% of U.S. adults take Ozempic or other GLP-1 drugs, according to data from PurpleLab, a health care analytics company.

One KFF Health Tracking Poll estimates 12% of adults have tried GLP-1s at least once.

But no state has a higher rate than Kentucky, where at least 2.6% of the population (nearly 120,000 people) has taken the drugs since January 2023, according to PurpleLab.

That figure jumps above 5% in the eastern mountains of Kentucky.

The true number of Kentuckians using GLP-1 drugs is likely even higher because the data tracks only prescriptions paid by private insurers, Medicare and Medicaid, and excludes patients like Hatter, who take off-brand versions of the drugs and pay out-of-pocket.

When asked what the real figure could be, Tenille Davis, chief advocacy officer for the Alliance for Pharmacy Compounding, said: “I couldn’t even venture a guess.”

In one sense, it’s not surprising Kentucky leads the nation in GLP-1 use, said Rachel Hogg-Graham, a professor of public health at the University of Kentucky. The state has the seventh-highest-diabetes rate and 11th-highest obesity rate , according to data from KFF and the U.S. Centers for Disease Control and Prevention.

Kentucky’s diabetes rate drives much of the demand for these drugs, especially Ozempic, which the FDA approved for diabetes treatment in 2017, Hogg-Graham said.

But Kentucky also has the fifth-highest-poverty rate in the country, according to the U.S. Census. This means some patients who are prescribed the drugs face a choice between paying for them or paying for day care, gasoline or other family necessities, Hogg-Graham said.

“Those are the factors that are really driving the conditions for these prescriptions being used,” she said.

'A double-edged sword'

Megan Burke is a nurse practitioner who specializes in non-surgical weight loss at St. Claire’s Medical Center in Morehead. She said about 60% of her patients (she sees about 1,000 patients each quarter) take GLP-1s.

Burke said the medications have been “life-changing” for some of her patients.

"You see them get off their blood pressure medication, and you see them wear a different size of clothes, and they're telling you about how they're enjoying exercise. They're doing more things with their family," she said. "It's very motivating."

Farther west, just south of Louisville in Mount Washington, Shelby Perkins said an off-brand version of semaglutide (the active ingredient in Ozempic and Wegovy) was one of the best medications she’s ever taken.

Finally, Perkins' joint pain, back pain and migraines vanished. Her blood glucose stabilized. She lost 56 pounds in five months. She said the semaglutide gave her hope she would not need to undergo surgery or restrictive dieting to lose weight.

"I was like, so God is real. It was just a blessing,” said Perkins, 25, a real estate agent. "For me, it really was a medication for health, not a medication for vanity."

But problems started when she stopped taking semaglutide in June after developing a rash across her neck and face she attributed to the drug.

Within a month, she regained 35 pounds. Perkins' weight had fluctuated her entire life. "But the way it stacked on after me stopping the medication, that's what was alarming," she said.

One industry-sponsored, peer-reviewed study published in 2024 found semaglutide was effective in maintaining weight loss for at least four years while taking the drug.

An industry-funded trial in 2022 found semaglutide patients regained much of their lost weight within a year of stopping the medication.

That’s what happened to Erin Slone, an insurance agent from Cynthiana, who took Mounjaro and Wegovy over two years, losing 65 pounds. She stopped the drugs and regained 15 pounds.

Looking to lose the weight, Slone decided to take off-brand tirzepatide, paying $470 every six weeks out-of-pocket.

"I don't like it, but I feel like I didn’t really have a choice," Slone said about her decision to return to weight-loss drugs. "It’s like a double-edged sword."

A national shortage

As the popularity of GLP-1 drugs skyrocketed in recent years, manufacturers couldn’t match the demand, leading to shortages nationwide.

Patients soon discovered they could buy off-brand medications containing the same active ingredients (semaglutide and tirzepatide) as the name-brand varieties.

Those medications are now available in medical spas and “compounding pharmacies” — independent pharmacies that are legally allowed to dispense off-brand, non-FDA-approved medications if there is an FDA-designated shortage of the name-brand variety.

And since insurance plans rarely cover compounded GLP-1 medications, patients usually pay out of pocket.

Even when the name-brand GLP-1 doses are available and patients can rely on their insurance to cover the costs, some pharmacies have stopped carrying the drugs because they’re losing money in the process, according to Ben Mudd, executive director of the Kentucky Pharmacists Association.

“If pharmacies are dispensing, they do it at a loss,” Mudd said.

Typically, pharmacies agree on a sale price after working with pharmacy benefit managers, who act as intermediaries between insurers and pharmacies.

The price of GLP-1s has increased over time, and Mudd said some pharmacy benefit managers have not updated their payment plans, leading to pharmacies losing $25 to $50 every time a customer buys a GLP-1 drug.

"Long-term, it's unsustainable," he said.

Legal battles begin

Every night for over a year, Jacqueline Barber slept on a couch next to a garbage can to manage chronic, uncontrollable vomiting. The stomach acid burned her throat so intensely, Barber said, that she developed a hernia.

The Louisville woman suspected Ozempic. She had begun the medication in August 2021, three months before the vomiting started.

By March 2023, Barber, who is 5-foot-3, said she had whittled down to 83 pounds. Her doctors placed her on a feeding tube, and she was diagnosed with gastroparesis, a condition associated with GLP-1 drugs, according to a 2024 study of nearly 300,000 patients .

Barber, 48, is one of over 2,200 people suing Novo Nordisk and Eli Lilly , claiming they failed to warn consumers of the full extent of their medications' side effects, including gastroparesis, which does not appear on Ozempic's warning label.

Barber said no amount of money could ever compensate for the medical, social and emotional damage caused by her gastrointestinal difficulties, though she said she has been billed over $120,000 for medical expenses and remains $100,000 in medical debt.

“I kept telling people, ‘this medication is killing me,’” she said.

In response to a request for comment, Novo Nordisk wrote that the allegations in the lawsuit are without merit and that the risks of semaglutide medicines are described in the product labeling.

"Novo Nordisk stands behind the safety and efficacy of all of our GLP-1 medicines when they are used as indicated and when they are taken under the care of a licensed healthcare professional," the statement reads.

Eli Lilly did not respond to a request for comment. The drug manufacturer previously sought to dismiss the first plaintiff in the lawsuit, claiming gastrointestinal risks from Mounjaro appear clearly on the label.

In the 1990s, another popular anti-obesity medication known as fen-phen was sold en masse, but the FDA withdrew approval when doctors linked the drug to heart defects. More than 9,000 lawsuits were filed against the drug manufacturer, American Home Products, and a federal judge ordered the company to pay $3.75 billion to the victims.

Andrew VanArsdale, an attorney representing Barber and other plaintiffs, said he intends the lawsuit against GLP-1 manufacturers to turn out differently.

He believes the drugs generally benefit patients and the public health, and he hopes the lawsuit will spur Novo Nordisk and Eli Lilly to produce a safer version of the drug with thorough warnings for consumers.

The price of health

After losing 62 pounds, Hatter, the Harrison County assistant superintendent, weighs less than her bariatric surgeons ever thought possible. The doses of tirzepatide freed her from food cravings, she said, after a lifetime of always feeling hungry.

"They have been miraculous for me in not being obsessed with hunger," she said.

Hatter remembers the “self-hatred” she felt toward herself as a young person because of her weight. Now, she worries the young people she sees walking the halls in Harrison County schools, especially young girls, will seek the medications for unhealthy reasons.

Sometimes, Hatter wonders what $580 every six weeks — over $5,000 a year — could do to help her family. Hatter thinks of her only son, whom she hopes to send to college, and whether she’ll be able to afford to do so.

"Women have a lot of guilt about pulling money out of their families, as mothers," Hatter said.

If she didn’t dedicate part of her earnings to her health, though, Hatter worries she would become like her grandmother, who spent the end of her life in a wheelchair because of weight complications.

“That carries with me,” she said.

"I love people. I want to enjoy that as long as I'm able, and I've got to do my part," Hatter said about her work to lose weight and stay active. "This is how I do my part."

This article is part of a collaboration between The Courier Journal and Boyd's Station, a Kentucky nonprofit that provides emerging artists and student journalists a rural place to hone their craft. Nina Baker received the 2024 Mary Withers Rural Writing Fellowship grant at Boyd's Station.

This article originally appeared on Louisville Courier Journal: 'Life-changing' or 'double-edged sword'? Kentucky leads US in use of new weight-loss drugs