Credit: Mikhail Nilov / Pexels

Christine, a North Carolina resident working in the legal field, has been used to hunger, food and weight occupying much of her mental energy. 

“I’ve been counting calories since I was 16 years old,” she said. “For me to lose weight, it’s like that’s the only thing I can possibly be doing. I have to devote all of my time and attention to thinking about when I’m going to eat and exercise.”

So when she decided it was time to explore medication for weight loss, the research process quickly consumed nearly all of her free time.

“I don’t know how many hours—countless,” she said. “It was part hobby, really.”

Christine, who spoke on condition that we use only her first name for privacy reasons, began using Mounjaro in November 2022. Mounjaro is one of a group of drugs that have recently gone viral — online and in real life — due to their efficacy in aiding weight loss (Ozempic and Wegovy are also in this crew). 

But trying to get access to one of these medications was a whole new level of time-consuming. Not only did she need to find a doctor who would prescribe the medication to her without judgment or stigma, she also had to find a pharmacy willing and able to fill the prescription  — and then have the money to pay out of pocket. Christine is employed, insured and privileged with both disposable income and time, and she still found the process of actually getting her medication to be discouragingly difficult.

“I have economic flexibility,” Christine said. “But it still shouldn’t be this hard.”

Perhaps no other medications on the market right now embody the reality of the American healthcare “business” better than these. The list prices for these drugs are in the high hundreds and low thousands of dollars for a month’s supply. And as they have gained popularity, drug shortages have compounded their inaccessibility. Patient-consumers are finding that “shopping” is inevitable.

Why are these drugs so expensive?

ClearHealthCosts looked at a collection of drugs broadly described as GLP-1 agonists, many of which are prescribed for Type-2 diabetes and are becoming increasingly popular to treat obesity. (A note here: Medical professionals and laypeople are increasingly acknowledging that terms like “obesity” and “overweight,” and the use of  Body Mass Index (BMI)  in healthcare are  stigmatizing and contribute to discrimination. Given that many insurers and providers still use these terms in official diagnoses and terms of coverage, we will be using them throughout this piece for the sake of clarity.)

In general, these drugs help to control blood sugar levels and appear to aid with weight loss by curbing hunger and helping the user feel full for longer. For those who struggle with binge eating, that can be a game changer. 

“I just thought that everyone's mind thought about food all the time, the way that mine did,” Christine told ClearHealthCosts in a phone interview. “And I had just accepted that for the rest of my life, I'm going to get fatter, I'm going to lose the ability to travel, I'm going to lose the energy to play with my kids. But immediately from starting on Mounjaro, it was like ‘oh my god, I'm going to have a different life’.”

While all these GLP-1 agonists are FDA approved and some have been on the market for almost a decade, only two actually have weight loss as their “on-label” usage: Wegovy and Saxenda. (These also both require the diagnosis of at least one comorbidity such as hypertension or elevated cholesterol.) The rest may be prescribed “off-label” for weight loss — a practice the FDA notes is common but up to the discretion of a healthcare provider.

While manufacturers have put out statements saying they don’t condone such off-label uses of these Type-2 diabetes drugs, their sales and profits on these drugs have skyrocketed as their weight loss potential has become more widely recognized. Wegovy has been in high demand because it is on-label, but a shortage has meant that more people are turning to Ozempic and others for their off-label use, leading to a cycle of exacerbating shortages. Wegovy’s manufacturer, Eli Lilly, even paused its marketing for Wegovy in May as it struggled to keep up with demand.

People with a diagnosis of “overweight” or “obesity” already face increased healthcare costs in nearly every arena.

“People’s total health spending, so the amount they pay, plus the amount their health plan pays, is over twice as much as people who don't have an obesity or overweight diagnosis,” said Hope Schwartz, the Health Policy Research Fellow for the Program on the Affordable Care Act at the Kaiser Family Foundation, who spoke with CHC in a Zoom interview. 

Schwartz and a team of researchers at The Peterson Center on Healthcare and KFF recently conducted a cost analysis that found: “on average, privately insured people with an obesity diagnosis have higher total and out-of-pocket spending than people without an obesity diagnosis.”

Even without considering popularity and shortages, GLP-1 agonists are expensive. For one, there aren’t FDA-approved generic versions on the market yet. And, crucially, many private insurers do not cover the medications when used off-label. Public insurance does not cover the off-label uses either (more on that later).

Who will write a prescription?

Any M.D. or D.O. can prescribe a medication. The question is, will they?

Finding a doctor can already be a daunting task, as many report that fatphobia, judgment and stigma about weight from doctors makes them reluctant to see medical providers for any reason. Some may want to consider visiting a medical clinic focused on weight that uses a variety of strategies, including surgery and medication like GLP-1 agonists. This may entail a formal medical diagnosis of “obesity,” meaning a BMI of 30 or higher.

Dr. Deborah Horn is the Medical Director for the UT Center of Obesity Medicine and Metabolic Performance (COMMP), in Houston, Tex.

“We want to support their physiology,” she said, of her clients. “Oftentimes, most of our patients report they've tried many times in the past, sometimes successfully losing weight, sometimes not. But their physiology is not allowing them to keep that weight loss off. Often that history of weight loss with lifestyle intervention followed by weight regain makes it appropriate for them to think about medication.”

Christine, however, did not expect her primary care provider to be receptive to her interest in medication. 

“People have such bad medical experiences being overweight that they just don't want to deal with another person telling you you should diet and exercise more,” she said. She immediately turned to a telehealth service for her prescription instead, as there are a plethora of new or rebranded telehealth startups focused on weight loss (a quick Google search shows dozens).  

For those who are regularly seeing a psychiatrist for mental health prescriptions, this may be an effective route too. Physical and mental health are, after all, intertwined, and societal stigmas around weight and body image are a risk factor for negative mental health consequences. Research has suggested that certain mental health drugs, like Vyvanse, are effective at treating binge eating, and on the flipside, a number of common antipsychotic drugs can cause weight gain. One’s psychiatrist might say it is outside the scope of their practice to prescribe any GLP-1 agonist, but it is worth a conversation to find out.

What will insurance cover?

The next obstacle to navigate is insurance coverage — unfortunately, many people may find that this is where the conversation ends.

“The way we make decisions about medications might shed some light on this,” said COMMP’s Dr. Horn. “We call it the ‘Five C's of choosing an anti-obesity medication.’ And unfortunately, the first C is coverage. Because even if there's a medication I would like to choose, there's really no point in talking about it together if we can't get coverage.” 

As of 2021, about half of the country’s population with private insurance are covered by employer-sponsored plans. Since the passage of the Affordable Care Act, most private and all public insurance plans do cover obesity screening and counseling. But the A.C.A. does not require health plans to cover medication or surgery. 

“With people increasingly turning over more in their jobs, I do think that employers have less of a long term view of their employees’ health,” said Hope Schwartz of KFF. “If they're only going to have an employee for five years or even ten years, paying for someone to take a very expensive medication is potentially one kind of reverse incentive for insurers to not want to cover the medications.”

So when it comes to GLP-1 agonist medications, most private insurers do not cover these drugs for off-label weight loss use. The two that are approved on-label — Wegovy and Saxenda — have a better chance at coverage. Folks with a pre-diabetes diagnosis may also be able to get coverage for a number of these medications. But it is all down to one’s individual plan. 

Even though Christine has an obesity diagnosis, she paid out of pocket for Mounjaro because its use for weight loss is off-label. Her insurance does cover Wegovy, but even then, her high deductible plan means that she would still be paying the drug retail price out of pocket for a few months until she hits the deductible amount.

“Wegovy is just as expensive if not more for me per month, because I have a high deductible health plan — $5,000. Wegovy runs me about $1,300 [per month] with insurance, but obviously, it's only going to be a few months that I would have to pay that.”

It’s best for each individual to call the insurance plan or review the terms to suss out what’s actually covered and consider the pros and cons of moving ahead under a high-deductible plan. But first, read ClearHealthCosts’ resources on finding out true costs, appealing an insurance denial, and appealing a bill. 

“In special cases we will appeal the insurance,” Dr. Horn said. “That usually requires multiple denials and prior authorizations and a peer to peer between the physician treating the patient and a physician that's involved with the insurance company review. It can happen sometimes, but otherwise, there's not really an option other than for the patient to pay cash for the medication.”

What about Medicare and Medicaid?

While Medicare does cover “obesity care” like screening and counseling as mentioned above, drugs for weight loss are explicitly prohibited, thanks to a 2003 law establishing the Medicare Part D prescription drug benefit.

Medicaid offers a bit more leeway. According to a recent survey by Bloomberg News, 10  states have “broad coverage” for weight loss drugs: California, Kansas, Minnesota, Wisconsin, Michigan, Pennsylvania, Virginia, Delaware, Rhode Island and New Hampshire. Six states offer “limited coverage”: New Mexico, Louisiana, Tennessee, Georgia, South Carolina and New Jersey. Connecticut is set to begin covering obesity drugs through Medicaid in July 2023.

“Since these more promising medications have come onto the market, there have been attempts introduced in Congress, some bipartisan support for covering these medications. But that's something that hasn't changed,” said Schwartz of KFF. “Kind of a major concern being that because these drugs are so potentially effective and because so many people in this country would be eligible, if Medicare was to start to cover them, the cost would be $13-$26 billion in additional health spending.”

Schwartz also noted, however, that the prescription drug provisions in the Inflation Reduction Act of 2022 could provide a pathway to lower the costs of these drugs. 

“With the new potential ability for Medicare to negotiate some drug prices through the Inflation Reduction Act, if Medicare did decide to cover these weight loss drugs, and then added that to their list of drug prices they would negotiate, that might be one mechanism that prices could come down,” Schwartz said. 

It’s yet unclear if GLP-1 agonists will be included, Schwartz added. But, “private insurers tend to take their cues from Medicare and Medicaid,” so even a minor change could have a strong ripple effect.

Options for saving money: read the fine print

Though the drug manufacturers are offering savings cards and touting enormous price drops, there are some key restrictions. Most of the savings are difficult to acquire by those who are uninsured, have public insurance (Medicare, Medicaid or Tricare), or are using the drugs off-label for weight loss.

The Ozempic savings card explicitly excludes full cash-paying patients, even for on-label use to treat diabetes. The Trulicity savings cards also aren't available to anyone without commercial insurance that covers the drug. Mounjaro also requires commercial insurance, but does offer a discount to those with insurance that does not cover the drug. Wegovy savings cards are available to people whose commercial insurance covers the drug, as well as those who have insurance that does not cover it, or are paying cash.

Another option for bringing down the costs is shopping around local or online pharmacies. Services like GoodRX can help locate discounts at local pharmacies — however, these are discounts off of the retail price, not the list price, meaning the pharmacies have bought their wholesale stock at the list price, marked it up to retail price, and then may apply a GoodRX discount. So even the best GoodRX discount might end up costing comparable to the original list price.

Screenshots taken June 13, 2023 for pharmacies in ZIP code 11220

Keep in mind: the GoodRx prices don’t always match what the pharmacy may say when you get there. And such coupons are not always accepted at the pharmacies listed, for reasons we don’t fully understand – but it’s worth knowing that the coupon might be rejected. Online pricing tools like this might get you into the ballpark, but may not be your final answer.

Screenshot taken June 13, 2023 for pharmacies in ZIP code 11220.

It is also a scavenger hunt to find a pharmacy that will honor the manufacturer’s coupons, as Christine found when she began paying out of pocket for Mounjaro in November 2022.

“I initially sent it to Amazon Pharmacy,” she said. “But at the time, Amazon wouldn’t apply manufacturer coupons.”

She transferred her prescription to PillPack, another online pharmacy — which, oddly enough, is a subsidiary of Amazon — and was able to fill her script and apply the manufacturer’s coupon. At that time, she ended up paying just $25 a month. But it didn’t last long.

“At the end of the year, I got an email from PillPack saying that they weren't going to be able to dispense with the manufacturer savings card unless you had a Type-2 diabetes diagnosis code on your prescription,” she said. 

Screenshot taken June 13, 2023 for pharmacies in ZIP code 11225.

Her experience appears to be common. Users on r/Mounjaro, a Reddit forum, have reported everything from their chosen pharmacies being out of stock, canceling orders, charging exorbitant “processing and handling fees,” rejecting coupons, and even encountering individual pharmacists who outright shame them for using the medication.

Because of the changes to Christine’s Mounjaro savings card offer, she switched over to Wegovy, which is covered by her insurance. 

“Figure out what your insurance covers, step one,” she said. “Or maybe you can switch to a spouse's insurance next year. Try to think big picture and don't spend $4,000 on medication this year when it would be covered next year.” She also believes that finding a supportive primary care doctor is the key to navigating that process.

Will any of this improve?

In May, the F.D.A. put Ozempic and Wegovy on its drug shortages list. NovoNordisk also announced it would be pausing promotion of Wegovy as well as limiting supply of certain dosages to wholesalers for distribution to retail pharmacies. 

The already-expensive prices and these latest shortages have compounded each other, driving a rise in — well, compounding.

Certain pharmacies and providers are offering “compounded” weight-loss drugs, which are mixed or otherwise altered dosages of generic semaglutide. Telehealth startups like Henry and Calibrate advertise “GLP-1 prescriptions” or “other forms of semaglutide (the molecule used in Wegovy®, marketed under the brand names Ozempic® and Rybelsus®)” as part of their subscription services for which no insurance is needed. 

“There's like a whole sketchy world,” said Christine. “My Botox injector is now doing compounded meds for this, basically catering to med-spa patients who want to look different.”

However, reporters have found that many compounding pharmacies are not being transparent about how and where they are sourcing these drugs from. It’s possible that the drugs are diluted to save costs, and therefore less effective, or are semaglutide sodium, a version of the compound that’s intended for research use only. The F.D.A. has warned against using compounded semaglutide: there is no oversight of these versions’ sources or dosages, and they’ve received adverse event reports from those who have tried them.

“Those semaglutide salts are not approved for human use. And that's really the only way we can estimate that compounding pharmacies would be able to make the medication,” said Dr. Horn, medical director for the UT Center of Obesity Medicine and Metabolic Performance.

The drugs’ high costs, ongoing supply-chain shortages and the plethora of profit-seeking businesses in the space signal that meaningful solutions for patients must come at a policy-level — and that’s the long game.

“These are drugs that people will probably take for decades of their lives,” said Hope Schwartz of the Kaiser Family Foundation. “But when you're talking about such a large portion of the population for such an expensive drug, it's a difficult proposition for insurers to want to cover that not knowing kind of ultimately what the long-term cost-effectiveness is going to be.”

“The kind of patchwork system, of people going to drug manufacturers, trying to find doctors who are able to prescribe them off-label, putting all of these pieces together,” she added, “probably won't be sustainable in the long term.”

“Other countries in the world are paying drastically less money for these medications, to the tune of $100 to $200 a month for patients instead of $1,300 to $1,400 a month,” Dr. Horn said. “And that's because they've negotiated with the industry partners at a national level. Until we do that, we will remain the company that funds the research and development for the rest of the world.”

Mary Steffenhagen is a journalist and audio producer. She covers healthcare for ClearHealthCosts and has reported on the impact of the COVID-19 pandemic on mental health counseling in public schools, immunocompromised...