Adding to the Kafkaesque financial toxicities that can accompany long-term treatment—I’m required by the internationally recognized rules of patient engagement to invoke an allusion to Kafka—is an insurance scheme that is short on transparency, shifts the burden of cost to the patient, and which has become a widespread practice in the United States: copay accumulators and maximizers.
As Monica Bryant, COO of Triage Cancer puts it, “Copay accumulator programs create a hidden barrier for people with cancer. The result is that people are left with unexpected bills and, often, tough choices between paying for treatment or meeting other basic needs.”
I’m not a litigious person; I’ve never even been to small claims court. But I am going to explain this predatory scheme affecting millions of patients, possible remedies, and why I signed on as the named plaintiff in a class action suit against a third-party pharmacy benefit manager: Gurwitch v. SaveOnSp.
In February of 2021, I woke up and discovered that $4,333 had been withdrawn from my checking account by my pharmaceutical benefit manager. I was four months into my first line of treatment for EGFR-mutated lung cancer and had enrolled in one of AstraZeneca’s patient-assistance programs. Between my insurance and the assistance program, the cost of my osimertinib was entirely underwritten and, for a patient juggling the many responsibilities that come with a late-stage diagnosis, having a system in place to avoid such a costly scenario had been reassuring.
During the next few weeks—in my mind-numbing attempt to unravel what happened and have the funds returned to me—I discovered that an additional drug channel had been added to the procurement process of my medication. For decades, US insurers have outsourced the administration of prescription benefits to middlemen called pharmacy benefit managers, or PBMs to minimize the cost of their obligation to cover prescription medications.
In the US, as treatment with specialty and precision medications became more wide-spread, health insurance companies have used their affiliated specialty pharmacies to dispense the pharmaceutical benefits of patients being treated with high-cost medications, including the biomarker targeted therapies indicated for lung cancer. More recently, many of these PBMs have added another layer of administration. They’ve hired shadowy third parties to deal with the very highest tier of medications. The result? Millions of patients are tasked with navigating three drug channels to receive their medication. What could possibly go wrong?
Despite having access to my medical records and bank account, the name of this third-party company, SaveOnSP, appeared nowhere on any documentation available to me. It took many hours of my already shortened life-span, countless emails, calls, and some crying on my part, before I was successful in having the funds returned. An explanation for why this happened was not forthcoming. Insurance companies follow the same code of conduct as many internet daters, so expect ghosting. You’ll never receive an apology much less any acknowledgement of a mistake made by the offending party.
According to All Copays Count, a coalition of 80 non-profit, non-partisan, patient advocacy and provider organizations representing millions of Americans with complex chronic diseases, 69% of those depending on copay assistance programs to afford their medications make less than $40,000 a year, so it is not hard to imagine the dire consequences of an accounting error of such magnitude. Not only could this temporarily wipe out a family’s resources, patients may not catch such a mistake right away. A mortgage or credit card payment might be missed resulting in, at best, damage to a credit record. Missed payments can have much worse consequences.
For example, in the fog of confusion during the early months after my diagnosis in 2020, I didn’t notice that my car lease payments had fallen off auto-pay. I missed two months of payments. In the US, auto finance companies are not obligated to let you know you have missed a payment; it is more profitable for them to repossess your car and resell it. My car was repossessed. It took days and significant funds to correct this situation, and it took a year to repair my credit rating.
My experience with SaveOnSP was a costly, but simple billing error. However, there is a far more serious and wide-ranging problem: SaveOnSP drags some medications, like mine, out of insurers’ standard formularies.
The company deems these literally lifesaving treatments “non-essential health benefits,” and then claims a loophole in the Affordable Care Act allows for insurers to ignore the act’s patient protections. Translation? PBMs and their third-party partners determine whether to apply contributions from patient-assistance programs to a beneficiary’s out-of-pocket payment obligations, including deductibles and out-of-pocket maximums. This has allowed insurers to collect twice. This is what’s called “double dipping.”
If a relative contributes $20,000 to the cost of your medication, that amount would count toward your deductible and out-of-pocket maximum. Why should funds designated specifically to assist a patient, just because they come from a Pharma company, not also be applied to your deductible and out-of-pocket maximum?
“As out-of-pocket costs for patients increase (next year the maximum amount for most private health insurance plans will be over $10,000 for an individual and $20,000 for a family in my plan), in order to afford their prescription drugs, people depend on copay assistance. It is just plain greed that insurers and others take that copay assistance, but don’t count it towards a patient’s cost sharing obligations,” said Carl Schmid, Executive Director of HIV+AIDS Policy Institute, whose patient base has been directly affected by this practice.
After realizing that millions of patients were being impacted, I wrote an article in the Washington Post detailing the mechanisms of this scheme and became affiliated with the All Copays Count coalition. Our goal has been to implement change through legislative action. Sadly, efforts have stalled.
In September of 2023, the US District Court for the District of Columbia issued a ruling stating that health insurers must count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs in most instances. However, shortly afterward the Biden administration announced the government wouldn’t enforce this ruling. The court had agreed with the patient community and confirmed that copay accumulators increase patients’ costs while simultaneously enhancing insurer profits. Alas, this issue is not understood widely. Because of the industry’s secretive practices, patients aren’t always aware of what’s happening. As a result, it has been difficult to garner support from elected officials.
Twenty-one states have adopted policies making certain PBM schemes that collect patient copay assistance, called copay accumulators, illegal; however, as Monica Bryant, COO of Triage Cancer notes, working state by state has limitations.
“Some states have passed laws prohibiting the use of accumulator programs, which is a good first step. However, because of a complex interaction with ERISA, a federal law, those state laws won’t apply to people with self-funded health plans from their employers,” she said.
Additionally, it seems such law do not apply to programs such as SaveOnSP’s, so-called “non-essential health benefits” programs.
In an attempt to be an informed consumer, I tried to mitigate my exposure to all such programs. I began investigating switching insurance plans. Again, I found myself adrift: PBMs and insurers are not bound by law to inform you of these programs. Not to mention that unlike back-to-school shopping season, a cancer diagnosis often hits out of blue, thwarting the possibility of performing due diligence in insurance shopping.
Recently, I had another encounter with SaveOnSP that illustrated the domino effect of mistakes that can be made when three channels become involved. I attempted to refill my prescription for an anti-anxiety medication. I was told I couldn’t because I had an unpaid balance of $5,363.28 for my osimertinib prescription. You know who really needs their anti-anxiety prescription refilled? A person in treatment for stage IV cancer.
Again, this WAS ANOTHER ACCOUNTING SNAFU that was only resolved through days of phone calls and emails trying to get one of the numerous entities to take responsibility. I am fortunate. I think about S. a doctor, and M. a waitress, both who are in treatment for lung cancer and the scores of other patients whose employment does not allow them the luxury of taking numerous hours of time during the workday to resolve such issues.
On December 26, 2024, the class action suit for which I am the lead plaintiff was filed against SaveOnSP, LLC, Express Scripts, Inc., and Accredo Health Group Inc. It is currently pending in the US District Court for the Western District of New York. In addition, Johnson & Johnson filed suit in 2022. SaveOnSP has challenged both cases. Unfortunately, the justice system moves at a glacial pace. Scratch that—with climate change, glaciers are disappearing much more quickly than the courts will ever move!
This is just one small but pernicious issue facing many of us in treatment for lung cancer and other chronic conditions, I’m hopeful that by lending my name and experience, I can be a part of easing this burden for all of us.
