Diabetes Community Speaks Out About PBMs

We’ve been exploring the complicated, opaque process of how Pharmacy Benefit Managers (PBMs) negotiate drug pricing in the U.S. and the effects on people with diabetes.

On one hand, PBMs claim they lower costs while serving their clients through rebate deals. But since their negotiations with insurance companies and employers are all behind closed doors, it’s a “trust us” mentality. When pressed, many PBMs claim they have no direct line to consumers (?) when it comes to price issues, and that we all should be grateful for the benefits these middle-men provide.

Yet many of us patients find ourselves constantly dealing directly with PBMs like Express Scripts and CVS Caremark, and more often than not, those interactions are a case study in frustration as we struggle to obtain the meds and supplies we need. Recent class-action lawsuits, news stories, and employer complaints reflect it’s not all unicorns and rainbows, as PBM proponents would have us believe.

And now, new legislation has just been introduced to force PBMs into transparency; the bill calls for them to disclose the total amount in rebates and discounts they receive from manufacturers for placing drugs on formularies, and just how much savings negotiated by PBMs on behalf of insurers actually goes to health plans.

Are PBMs helping? is a question often sparks eye-rolling, head-shaking and even fist-waving among patients.

Today, we continue our #PBMsExposed series with a roundup of the “Top Gripes” that we gleaned directly from PWDs (people with diabetes) who indeed deal with these companies on a regular basis. Special thanks to our correspondent Dan Fleshler, a fellow advocate and type 1 in New York, who’s been following this issue and contributed to this report.

Top Gripes on PBMs (from the Diabetes Community):

1) Poor Customer Service

The No. 1 complaint theme that people mentioned was a terrible customer experience with these PBMs, which is especially painful given that the products we’re after aren’t just some “nice-to-have” consumer goods, but meds that our lives depend on.

Passing the Buck: “My experience with Optum Rx… took weeks to sort out,” complained one parent of a PWD. “They passed me off to various people with each one giving a different excuse to explain why my son’s supplies were no longer covered. It was always some other entity causing this issue, from the pharmacy filling it, to the insurance company, to the union, etc. Their primary focus seemed to be passing the blame elsewhere.”

Inconsistent Answers: “I talked to three people at [CVS] Caremark, and got three different answers about the status of orders,” one reader told us.

Another complained about dealing with CVS Caremark on non-diabetes meds, too: “Every step of the way, I’ve gotten inconsistent instructions and no explanations.”

Out-of-date Records: One PWD told us about getting frequent, pre-recorded phone messages that said, “This is Optum Rx. There is a problem with your prescription. Please call…xxx.” When I called, each time (it) takes at least 10 minutes before they figured out what the problem was.”

In other words, their Call Center is not set up to give the customer service reps immediate access to current patient records they would need to understand the situation. Come on! Isn’t that their core business?

Um, What Are You Talking About?: A reader relates that someone at his PBM gave quoted him a very high price for his co-pay for short-acting Apidra insulin. When he said he couldn’t afford it, the consumer rep proceeded “to inform me of other insulin options” on his plan.

The problem was, “She rattled off a list of them, including basal insulins like Lantus that weren’t what weren’t what I needed! That’s a different drug, essentially.” He had the same experience with thyroid medications, which are also not interchangeable.

While we can’t expect all customer service people at PBMs to understand the ins- and-outs of every medication, they should be equipped to know which drugs are in the same category and could potentially replace each other. Or, shouldn’t a trained medical professional, pharmacist or someone more qualified be tasked with offering treatment options?!

2) Mixed Messages

The second most prevalent gripe against PBMs was that they seem to be withholding information, and the info they do provide is quite often inconsistent.

Don’t Ask, Don’t Tell: “If you don’t ask questions, you can get screwed. They set it up so people assume meds aren’t covered,” one PWD said. He described how he wasn’t told that his doctor could write to Optum and explain that a drug was “medically necessary” in order to get it moved to a less expensive “tier” in the formulary.

Not Forthright About Options: Another PWD mentioned that someone at Express Scripts flatly told him that a medication “wasn’t covered,” without any explanation that it was classified in a different tier, and that patient and doctor can appeal the denial, which he had to discover on his own.

In general, consumers who don’t know how to navigate the formulary system, or passively accept what PBMs tell them, will pay more money.

People, don’t forget that we are the customers here. We can put pressure on PBMs to be more transparent with our options!

3) Going Against Doctors’ Orders

This one is HUGE! With the help of outside experts, PBMs establish the formularies that push and prod consumers to choose “preferred” (i.e. cheaper) drugs and therapies — overriding doctor’s recommendations (and patient preferences) on what therapy works best for an individual patient. This is the theme of the whole Prescriber Prevails movement and what some advocates are also referring to as “formulary-driven switching” or “non-medical switching.”

“Preferred” Meds: “Express Scripts denied my Victoza two weeks ago,” one PWD told us. “How do they have power over what my doctor wants me to take?” Such a common complaint!

“Prime Therapeutics mailed me a letter stating that my Novolog (bolus) insulin was covered… and then mailed a second letter two weeks later that I had to ‘fail Humalog or Humulin’ before Novolog would be covered. So now I will switch to Humalog and hope it doesn’t crystallize in my pump.” How sad that patients have to prove that they’ve “failed out” of a non-optimal med before they can get what they really need.

Step Therapy: This fail-first policy is known as “step therapy.” According to a Health Affairs analysis, it can “delay access to the most efficacious therapies,” increase the duration of illness and lead to increased health care costs in the long run.

To be fair, health plan sponsors and health insurers also participate in propping up this system, alongside PBMs. But the PBMs design the formularies, so they need to be held accountable when the system makes people less healthy.

4) Bypassing Neighborhood Pharmacies

One more common pet peeve is that many PBM plans require consumers to use mail order services instead of local neighborhood pharmacies, which some folks prefer. In other words, they’re strong-arming patients to drive their business.

The Myth of Cost-Savings: The PBMs’ trade association, the PCMA, claims that “mail-service pharmacies are able to keep prescription drug costs down since they are more efficient than other types of pharmacies and have lower overhead costs.”

Independent pharmacists say that’s a myth and prices end up being higher in the long run with the PBM’s mail order businesses.

Regardless of who’s right, we’re rooting for local pharmacists, who offer an in- person experience and advice that’s invaluable to many patients.

Being able to interact with an expert behind a counter and get information and tips is of real value to many people. Also, when people run out of supplies or drugs and haven’t reordered in time, they need to be able to go down the street and get their essential meds and supplies quickly. The PBM mail order requirements don’t let you do either one, at least not very easily.

These are just some of the ways that PBMs impact the lives of patients. Do you have any more experiences to share? We’re all ears!

Next up in our continuing coverage of PBMs are some broad suggestions about national and state policies that could fix some of these systemic problems. Stay tuned for that report, coming soon.

This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.

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