If you are on a journey to lose some serious weight, you know the hard part isn’t always skipping sweets. It can be finding the weight loss medication your doctor has prescribed for you.

In a FOX 32 special report, Sylvia Perez looks at what’s happening with the Wegovy supply.

“To feel like I have to call 101 pharmacies just to get a medication is crazy to me,” said Michelle Works, a Wegovy patient.

Works has been taking Wegovy for about a year now. She says in the beginning it wasn’t hard to find it at a local pharmacy, but now that’s changed.

“I don’t drive to another state but I have driven 45 minutes in my local area to get my medication,” she said.

Dr. Neha Shah at Edward Elmhurst Medical Group is certified in both obesity and lifestyle medicine. She has patients who are going to extremes to get their Wegovy prescriptions filled.

“I’ve had patients who have drove out to Wisconsin because they saw a pharmacy. They are driving to different state lines to see if they can get access to this medication,” Shah said. “There are Facebook groups where patients are going online to see if they can get access. ‘Oh this pharmacy in downtown Naperville has two boxes, whoever can pick it up.’”

“I have a patient who mentioned to me last week, she says ‘I spend about an hour and a half every single day trying to call different pharmacies because I don’t know when my next refill is going to come in,” Shah added.

Finding Wegovy in stock is only half the battle.

“The most I have paid is $200,” Works said.

That’s for a three-month supply. When Works picked up a re-fill yesterday at her regular pharmacy, she said she “got it for nothing.”

Shah said she sees most patients paying $400 to $500 for Wegovy.

“They are emptying their HSA and FSA accounts to get coverage for these medications. I’ve had a patient who, last year, paid out of pocket for his Wegovy for close to a year because of insurance issues and he ended up taking out a second mortgage on his house because of it,” Shah said.

So what’s going on with getting a Wegovy prescription filled?

“You would assume that something as popular as Wegovy is, it would be a massive blockbuster for pharmacies. It just isn’t,” said Antonio Ciaccia, CEO of 3 Axis Advisors.

His firm consults with everyone from employers to health care provider groups to state attorney generals on drug pricing issues.

“We are essentially drug busters. If somebody is overcharging on medicines, they can hire us and we’ll help them get a better deal and realign their pharmacy experience,” Ciaccia said. “The really important thing to understand here is that the pharmacy experience, financially speaking, is a casino.”

“They will make a lot of money on some drugs. They will lose a lot of money on some drugs. Some pharmacies are winning in that model based upon their overall drug mix. Other pharmacies are losing.”

Ciaccia says the problem is pharmacies can do little to control their own financial fate.

“It is really just a matter of which PBM’s are choosing to favor which drugs, and which patients are walking in the door getting the drugs favored by the PBM’s,” Ciaccia said.

PBM stands for “pharmacy benefit manager.” In some cases, it is a division of your health insurance that administers your prescription drug coverage. In others, the PBM is an independent company.

According to the FTC, they are are hired to negotiate rebates and fees with drug manufacturers and reimburse pharmacies for patients’ prescriptions.

“Pharmacies are choosing to no longer stock these medicines because PBM’s are not necessarily paying commensurate with the actual value of the product let alone the service the pharmacy is offering,” Ciaccia said.

In his casino analogy, the PBM is also the “house.”

“Without question. What do we know about the house? The house always wins,” Ciaccia said.

He said this problem isn’t happening only with these new “red hot” weight-loss drugs.

“It’s something that has happened for many years and in fact, our research shows pharmacies are losing money relative to the cost of the drug on roughly 20% of everything that they actually dispense,” Ciccia said.

“The average loss reported for 30 days on these prescriptions was $40 per prescription. They’re losing $40 on a 30-day prescription for these products. Ninety days they’re losing as much as $120,” said John Beckner, senior director for community initiatives for the National Community Pharmacists Association (NCPA).  

Those are some of the preliminary results from a recent survey by the NCPA. The group adds Wegovy prescriptions are up 180% in the last year.

“So pharmacies are making the difficult decision of either not stocking it or, depending upon how low that reimbursement is, having to turn away patients,” Beckner said.

“We’ve seen access issues with GLP-1’s across the board from small pharmacies all the way up to the largest pharmacies. In fact, some of the largest publicly traded pharmacies have disclosed that what they are experiencing what they call ‘head winds’ as a result of the increased demands for these products,” Ciaccia said.

In many states, Ciaccia says PBM’s essentially answer to no one from a regulatory perspective.

“PBM’s will certainly have preferable cost-sharing arrangements with preferred pharmacies relative to non-preferred. But it is not necessarily universally true that the patient gets better pricing at those preferred pharmacies relative to non-preferred pharmacies,” Ciaccia said.

In his line of work, Ciaccia said he’s seen many instances where patients overpay even when they have their prescription filled at a preferred pharmacy for the PBM.

“PBM’s are not here to work for the consumer. PBM’s work for the plan sponsors that they work for and often times the interest of the plan sponsor will not be the same as that of the patient. In fact, we see many instances where patients are overpaying for their medicines while rebates are generated to the PBM and to the plan sponsor and not shared with the patient,” Ciaccia said.

If that’s the case, what are the odds a patient will ever hit the pharmacy pricing jackpot?

“All you can do is research. You go to a pharmacy, you bring your benefits card and they tell you what the price will be under that benefit plan,” Ciaccia said.

Ciaccia said price checking a few pharmacies could save you thousands of dollars a year. Because when the cost is too high, many patients often stop taking their medication simply just because they can’t afford it or it’s not covered by insurance.

“The three biggest pharmacy benefit managers are all part of companies that are in the top 20 of the Fortune 500 corporations. These are in the hundreds of billions of dollars of revenue kind of companies,” said Dr. Tim Classen, a healthcare economist at Loyola University Chicago.

“There’s been a lot of attempts at regulation. They’ve been in Congress. They’ve been in Florida. Certain states have tried to develop regulations or bills, legislation to try to limit the market power of pharmacy benefit managers. But that’s typically a challenge. These are massive companies,” he added.

In 2020, the Illinois Department of Insurance received the authority to license and regulate all pharmacy benefit managers operating in the state.

In June 2022, the Federal Trade Commission announced an inquiry into “the prescription drug middleman industry” – requiring the six largest pharmacy benefit managers to “provide information and records regarding their business practices.” The FTC’s inquiry will analyze the impact PBM’s have on “the access and affordability of prescription drugs.”

So far, it has received at least 24,000 complaints or public comments regarding pharmacy benefit managers.  

“What we do know about these drugs is if you do stop taking them it is very common for you to go right back to where you were from a weight perspective,” Ciaccia said.

That’s been a concern for Works. She’s lost only half of the 50 pounds her doctor said she needs to lose because she is pre-diabetic.

“You have success and then all of a sudden, bam, you see the numbers going up on the scale. I’ve tried this, I’ve tried that. Then my anxiety starts rolling in,” Works said.

“This is also a medication that needs titration, which means that every month they are on the medication they are supposed to go up in the dose,” Shah said.

“So if they go more than two weeks without the medication they likely will suffer with some pretty severe side effects. I’ve had patients who have ended up in the hospital who have not had their medication for three weeks and started their dose at the higher lever and now they are throwing up, having nausea,” she added.

And the list of patient concerns doesn’t end there.

“I have patients who are taking Wegovy who are on the list for a liver transplant and they can’t get their liver transplant until they lose a hundred pounds. I have patients who need a knee replacement or a hip replacement who are unable to get access to that medical care because their doctors are requiring 50 or 70 pounds of weight loss,” Shah said.

So in the meantime, Works has come up with her own solution to manage when her Wegovy prescription will be filled next.

“I started alternating my medication. Typically you are supposed to take it every, week but I started taking it every other week just in case, I won’t run out,” Works said.

What did her doctor say?

“I didn’t tell my doctor,” Works said.

There are other weight-loss drugs doctors can prescribe besides Wegovy, but some experts say patients might not see the same results.

FOX 32 contacted Novo Nordisk, the maker of Wegovy, and several pharmacy benefit managers about our story. Novo Nordisk sent us a statement that said:

“Today, there are approximately 110 million adult Americans living with obesity and approximately 50 million of them have coverage for anti-obesity medicines. It’s important to note approximately 80% of U.S. Wegovy patients with commercial coverage for Wegovy are paying $25/month or less for Wegovy. For commercially insured patients who do not have insurance coverage for Wegovy, or for those who pay cash for their prescriptions, they may use the savings offer to receive $500 off the full retail price. The offer is good for (12) 28-day fills.”

“Novo Nordisk believes the most effective way for the millions of Americans who need anti-obesity medicines to be able to access and afford them is to ensure these medicines are covered by government and commercial insurance plans. We need to work with our elected officials to push forward legislation that recognizes obesity as a chronic progressive disease and supports the fair reimbursement of treatments. We advocate for patients and policies that support access to all obesity treatments, including coverage for anti-obesity medications in Medicare Part D. We also actively work with private insurers and employers to encourage broader coverage of anti-obesity medicines.”

As for the pharmacy benefit managers, FOX 32 contacted three of the largest companies: CVS Caremark, Express Scripts and Optum. All three referred us to their trade associaton, the Pharmaceutical Care Management Association.

The PCMA sent FOX 32 the following statement regarding whether or not pharmacies are being paid under cost for Wegovy:

“Importantly, only drug companies set and raise drug prices. Pharmacy benefit companies are the only check against the drug companies’ pricing power,” the statement said. “Additionally, pharmacy benefit companies reimburse pharmacies based on the terms of the contract they agree to. Whether Wegovy or Zepbound is covered, and the cost-sharing associated with accessing it, is a decision made by the patients’ health plans sponsor, not the PBM.”