Octavio Jones for BI
- A woman who had life-changing results on a popular weight loss drug struggled to afford it for years.
- She found stability with a cheaper version of the medication through the booming telehealth market.
- Drug makers have come under scrutiny for high prices in the US, where meds can cost $1000 monthly.
Tara Rothenhoefer, a 49-year-old Florida resident, says her life changed when she joined a clinical trial for a promising new weight-loss medication.
Over the course of the 18-month trial, from 2020 to 2021, she lost more than 200 pounds — more than a third of her body weight. Suddenly, she didn't have pervasive "food noise" or preoccupation with eating that had bothered her for years, allowing her to freely pursue healthy habits.
Rothenhoefer had been testing a drug, sold by pharmaceutical company Eli Lilly, which later won FDA approval for weight loss in 2023 under the brand name Zepbound. A similar version of this drug, called Mounjaro, has been available to people with type 2 diabetes since 2022.
But when the trial ended, she was faced with the prospect of paying over $1,000 per month to continue this drug, or try to keep the weight off unmedicated — an incredibly tricky feat since the drug's effects are not long-lasting, as far as we know.
Now, after three years of navigating a nightmarish maze of shortages and lack of insurance coverage, she finally has steady, affordable access to her medication.
She's not only one.
The high price of weight-loss medication has left out millions of Americans who could benefit, as highlighted in recent Senate Committee Hearings, where Novo Nordisk's CEO faced tough questions about its versions of similar drugs, Ozempic and Wegovy.
Here's how she, like many others, has found a way around the snarls of the healthcare system to stay on the drug.
At first, she tried the pharma solution: coupons
After the trial ended, Rothenhoefer's doctor issued her a prescription for Mounjaro but she knew she couldn't afford it with her office job.
Not a problem, manufacturer Eli Lilly told her — she could get a coupon, allowing her to access the drug at a steep discount.
Providing coupons is a common practice for drug makers to incentivize patients to try their product, instead of a competitor's, especially when it's a new offering in an already-hot and high-priced market.
However, the coupon expired in June 2023. And all she could do was ration out her remaining doses and hope for the best.
"My insurance doesn't cover it. Most people can't afford it. I had no choice," she said.
Spreading out doses to try to make the drug last longer
Rothenhoefer did what she could to make her supply of medication last, and tried to dose every 10 to 14 days instead of weekly, but the scale began creeping back up regardless of what she did.
"I was having a lot of fluctuations in weight even though my habits were the same," she said.
Research suggests that people who lose weight on GLP-1 medications need to continue taking them or they'll regain the weight so Rothenhoefer needed a long-term plan just to keep her weight stable.
"I'm in maintenance, which I'll be in for the rest of my life," she said.
But she's since been able to find a steady, affordable supply, and now takes a dose of 7.5 - 10 mg of compounded tirzepatide weekly, delivered to her door, and plans to stay this course for at least the next year, if not longer.
The promise of cheaper 'compounded drugs'
Rothenhoefer said she had heard about a cheaper version of the GLP-1s known as compounded tirzepatide.
The active ingredient in Mounjaro and Zepbound is tirzepatide, one type of GLP-1 drugs, which mimic hormones that our bodies naturally produce to control appetite and blood sugar. (Ozempic and Wegovy contain a similar drug called semaglutide.)
Compounded medications are custom formulations of drugs provide by specialized pharmacies. Since brand name GLP-1 drugs have long been in shortage, drug compounders are legally allowed to fill the gap in demand with their own versions of the same active ingredients, semaglutide or tirzepatide.
While regulated, these compounded drugs aren't FDA-approved, raising concerns from doctors about variations in quality.
The grey market of weight-loss drugs is vast and complicated.
Some weight-loss clinics or med spas offer injections for as little as $20, with way of vetting what you're getting, and some online clinics are simply money scams, a recent study found.
Rothenhoefer contacted a telehealth company with a verified, credentialed compounding pharmacy.
The price for her dose of the compounded version is $329 monthly, compared to the brand name's list price of more than $1,000 per month.
Pharmaceutical companies are pushing back against their low-cost competitors in the GLP-1 market.
In August, Eli Lilly halved the price of its weight-loss drug Zepbound through single-dose vials — a bid to lure customers back to brand-name drugs, analysts said.
But Rothenhoefer said that if manufacturers want people to buy their products, prices need to keep dropping.
"I think everyone would be on the branded if it were accessible and affordable. But there are people out there that are alive now that might not have been or might have been in five years if they didn't get their health under control," she said of patients like her who are now using compounded medications.
A huge relief
Previously, Rothenhoefer said she was constantly worried about protecting the dwindling stockpile of medication in her refrigerator.
Now, with reliable access, a huge burden has been lifted, Rothenhoefer said. She is no longer fixated on rushing to get ice in a cooler for her meds as a first priority, and is free to think about everything else that matters.
"I don't have any fear at all anymore," she said. "My mind has been totally put at ease and I can now focus on the rest of my life."