Sooner or later, this will be your prescription

OPINION

Tom is an 84-year-old New Jersey man on Medicare. His doctor recently prescribed Xdemvy: an eye drop. Without insurance, the retail price he was quoted was $2,500. With his Medicare coverage, his cost was about $650. But there was a catch.

His doctor advised Tom that the only pharmacy who could fill it was a specialty pharmacy tied to CVS Caremark. When Tom tried to get it somewhere else, the price was much higher.

Think about that. His doctor prescribed a specific medication. But someone else effectively decided where he had to buy it.

Tom didn’t choose that arrangement. Neither did his doctor. He just needed his medication. And that is how most Americans will eventually meet a pharmacy benefit manager. It won’t be in a newspaper article, legislative hearing, or by reading the fine print in an insurance contract. You’ll meet a pharmacy benefit manager when someone you love gets sick.

The company you’ve probably never heard of.

Most people have no idea what a pharmacy benefit manager, or PBM, is. But if you have prescription-drug coverage, there’s a good chance one has enormous power over what medication you take, where you get it, and what you pay for it.

PBMs work for health plans to manage prescription benefits. They negotiate with drug companies. They help decide which medicines your insurance will pay for. They help decide what pharmacies get paid and how much. They can even decide what pharmacies you are allowed to use if you want your insurance to cover your prescription. That’s a lot of power.

Then something happened that changed the equation. The biggest PBMs vertically integrated into the enormous healthcare corporations that also own the pharmacies. That means that the company standing between you and your prescription likely also owns the pharmacy where you get it.

As a result, PBMs can influence and decide what prescriptions they pay for and what you pay for them. They can tell you where you must get them. And they can own the pharmacy they send you to buy them. If that sounds like a conflict of interest, you’re beginning to understand why we’ve spent months fighting this battle.

Imagine it’s cancer.

We participated in conferences with the RCCA, one of the nation’s largest networks of cancer specialists. They described the problems they encounter getting certain cancer drugs to their patients because of rules requiring some medicines to come through designated outside pharmacies.

Forget the industry terminology and imagine this is your wife. She has cancer. She’s sitting in an oncologist’s office. Her doctor wants to treat her. But instead of the doctor simply having the medication there and administering it, the insurance arrangement requires the medication to come from a specific outside pharmacy; one owned by a company owned and controlled by your insurer.

Maybe the medication arrives on time. Maybe it doesn’t. Maybe her bloodwork has changed. Maybe her doctor needs to change the dose. Maybe her treatment needs to change altogether.

For the people running the system, this is a way of distributing medicine. For your family, it’s cancer treatment. And researchers have found something extraordinary about these arrangements.

A study published in JAMA Network Open examined cancer drugs supplied this way. The insurance plans paid less. But the patients paid more. And not just a little more. The average monthly out-of-pocket spending in the study was $315 under these arrangements compared with $145 when the doctor’s practice obtained the medicine itself.

So, the system saved money. It just didn’t save money for the cancer patient.

Remember that the next time the PBM industry tells you that restrictions on where patients get their medicine are necessary to “keep costs down.” When that happens, ask one question: whose costs?

Then there’s Kimberly.

Kimberly Wolf suffers from serious chronic illnesses. According to a federal lawsuit she filed this year against Accredo Health Group and others, in the U.S. District Court for the Northern District of Illinois, medications can largely control her conditions when she receives them. But Kimberly says she was required to get her specialty medicines from Accredo, a PBM preferred pharmacy.

She says she repeatedly asked to use a different pharmacy. She was denied. She was told she had no choice. And then, according to her lawsuit, there was a period when she waited two months for one of her medications. The complaint says she suffered burning sensations, stomach problems, and extreme back pain while she waited.

Think about that. For two months she called and waited. There were other pharmacies. Kimberly wanted to use one. But according to her lawsuit, her insurance said “no.” She could only use Accredo.

Why is that important? Because Accredo and Express Scripts are part of the same corporate family. And Express Scripts is one of the largest PBMs in America.

Kimberly isn’t alone in her distress. Eight other patients joined her lawsuit. One says she went four months while the pharmacy refused to fill two prescriptions her doctor wrote.

These are allegations in an ongoing lawsuit. The companies dispute the case, and the allegations have not been proven in court. But the questions raised by Kimberly’s story don’t require a law degree. If a company can tell a sick person which pharmacy she must use, why should that company be allowed to send her to a pharmacy it, or its corporate family, owns? And if that pharmacy fails her, or them, why can’t they leave?

Three people. One problem.

An 84-year-old New Jersey man needs an eye drop. A cancer patient needs medical treatment. A woman with chronic illness needs medication that controls her symptoms.

Their illnesses are different. Their medicines are different. Their insurance is different. But their problem is the same. Someone they never met has enormous power over their medical treatment, how they get their prescriptions, where, and what they pay for them.

This is what we’ve been trying to explain for months. Except now you don’t need to understand rebates, spread pricing, or even vertical integration. You only need to ask yourself one thing: What happens when it’s my family?

Follow the money.

The PBM industry insists their system saves money. So, let’s talk about the money.

The Federal Trade Commission examined the three biggest PBMs. We’ve mentioned them before: Express Scripts, CVS Caremark, and New Jersey’s benefit provider OptumRX. What it found should infuriate anyone who has ever stood at a pharmacy counter wondering why a prescription costs so much. These companies tend to dictate how much pharmacies get paid for certain prescriptions.

They also own pharmacies themselves. And, shocker, when the FTC followed the money, it found that the PBMs generally paid their own pharmacies more than competing pharmacies for the same drugs. Of the drugs the FTC studied over six years, the PBM’s own pharmacies took in $7.3 billion more than the estimated cost of acquiring those drugs. The FTC also found that prescriptions with especially large markups were disproportionately filled by pharmacies connected to the PBMs. It’s no wonder local pharmacies can’t compete in this anti-competitive market, and why you can’t get your prescription at the pharmacy of your choice.

In plain English, the PBMs make the rules. They steer the customers. They own the pharmacies. And their pharmacies make billions in profits at your expense. That’s not an accusation from us. That’s what federal regulators found when they looked at the numbers.

And every time the industry is challenged, we hear the same thing. The employer chose it. The health plan agreed to it. We’re saving money. We’re keeping prescription costs down. We’ve heard those arguments in New Jersey. Other states are hearing them too.

Last month, Louisiana’s Attorney General sued Express Scripts and another company involved in its drug-rebate business. The Attorney General alleges these companies used their power to hurt competition, squeeze competing pharmacies, and limit patient choice.

Those are allegations and Express Scripts can defend itself. But Louisiana is asking the same basic question we are asking. For whom is this system really working? Because eventually “we save money” isn’t an answer. It’s a claim. And claims can be proven. So, we say again, prove it.

Open the books. Show us what the drug cost. Show us every discount and rebate. Show us what the insurance plan paid. Show us what the patient paid. Show us what the pharmacy received. Show us what the PBM made. And when the PBM sends a patient to a pharmacy owned by the same corporate family, show us exactly who profited from that decision.

If this system saves New Jersey families money, the numbers will prove that. But if it doesn’t, New Jersey families deserve to know that too.

You don’t meet this system until you’re sick.

The most important thing we learned in this fight is that you don’t meet this prescription drug system until you’re sick. You don’t meet it until you or someone you love is at your most vulnerable. Most people don’t think about who controls their prescription benefits. Why would they? Until something goes wrong, it’s just another insurance card in your wallet.

Then your husband gets cancer. Your daughter develops an autoimmune disease. Your mother needs a prescription that costs thousands of dollars. Your child needs a drug the insurance company won’t cover. Your pharmacist tells you your prescription can’t be filled there. Your doctor tells you the medicine you need isn’t the medicine your insurance will pay for. Or you’re just an 84-year-old man trying to get an eye drop.

That’s when you meet the system. And that’s the worst possible time to learn how little power you have inside it. Because when somebody you love is sick, you aren’t an informed healthcare consumer shopping for the best deal. You’re a husband, wife, mother, father, son, or daughter. You’re scared. You want answers. You want every decision you make to benefit your loved one. And the corporations on the other side of that transaction know that too.

That’s why this fight matters now.

For five articles, we explained what’s wrong with the PBM system. We talked about transparency, patient choice, hidden money, and companies controlling prescription benefits while owning pharmacies themselves. We called for audits, competition, and accountability. Now we’re saying something simpler. The time for change is now.

A company can negotiate prescription prices without owning the pharmacy it sends you to. It can administer drug benefits without abusing their power to capture the prescription for itself. It can compete for your business without controlling whether you’re allowed to take your business somewhere else.

PBMs tell us they create savings. Then let them compete and prove it. If their pharmacy has the lowest price and best service, patients will choose it. If cancer medicine gets to patients faster, doctors will use it. If their system really saves employers and taxpayers billions of dollars, transparent numbers will prove that too. They don’t need to control you to prove their value.

That’s why we believe New Jersey must look seriously at the ownership problem at the heart of this system. The solution is called delinking, and it matters. The company controlling your prescription benefit shouldn’t be able to use that power to steer your prescription to a pharmacy it owns.

Separate those interests. Give patients real choices. Make pharmacies compete. Don’t allow these large healthcare corporations to pad their pockets at your expense. Cap the dispensing fees and apply them evenly across the industry instead of allowing these vertically integrated mega-corporations to use their influence to push choice and competition away. Open their books. Put the patient back where the patient belongs: at the center of the decision.

Because you’re not watching someone else’s fight.

Look around at your dinner table tonight. Maybe everyone is healthy. Thank goodness for that. But sooner or later, someone at your table will need prescription medicine. Maybe it will be routine. Maybe it will be expensive. Maybe it will be something to keep them alive.

When that prescription is written, you shouldn’t have to worry whether the decision about where it’s filled is made because it’s best for you or the bottom line of the company controlling the benefit. That’s what this is all about.

Tom needed an eye drop. A cancer patient needs treatment. Kimberly needed medicine that controls serious chronic illnesses. Ask yourself, who’s next? Maybe it’s your mother, husband, child, or you. We don’t know. But we do know this. You shouldn’t have to wait until someone you love gets sick to discover that a company you never met has more control over your medication than your doctor or you.

This fight isn’t about PBMs anymore. It’s about your family. And we need to fix this system together before your family becomes the next story.