When you go to Cancerland, like I did after receiving a Stage 4 lung cancer diagnosis in 2020, you frequently hear others refer to your battle with the disease as "battling" it. I prefer to refer to my daily one-pill biomarker-directed therapy as "tackling" cancer. However, if I am at war, it is with a system of insurance that operates more like an extortion tactic.
Taking on cancer while battling the insurance system
Early one morning in mid-January 2022, my phone rang. This is how I remember that call.
I'm Unintelligible Name from SaveOn, hello.
“Who? I never shop at Sav-On pharmacies.
We are SaveOnSP, a specialised pharmacy, not Sav-On pharmacy. Just to add to the confusion, SaveOn and Sav-On are both pronounced precisely the same.
I explained, "I recently switched insurers, and I've been in frequent communication with my new plan. They have a deal with Express Scripts, and Accredo has been designated as my specialist pharmacy.
Yes, we are the specialised pharmacy of your specialty pharmacy. You will be charged the entire $4,500 co-pay each month for your speciality prescription if you don't enrol with us. We have all of your data. To allow us to handle your account, all we need is your verbal approval.
The $4,500 co-pay was higher than my plan's deductible and out-of-pocket maximum, but I forgot to inquire how they arrived at that figure because I was so shocked and certain this was a scam call.
My caller said, "You'll get a bill, but don't pay it."Working with us ensures there are no upfront costs for you."
“Okay?” I answered. Was there really an option? For a one-time connection, I've had longer consent talks. I instantly dismissed the call and didn't get any papers, but a few weeks later my regular drug shipment and a $4,445 Express Scripts bill showed up. Although it stated that I might not owe this amount, a detachable payment slip was included, along with a return envelope. I threw the bill into my constantly growing, supersized file that I've dubbed "insurance gobbledygook," keeping in mind the caller's assurances. But the following day, when I went to an ATM, my balance was much smaller than I had anticipated. Express Scripts has debited $4,445 from the account.
I spent the most of that week's waking hours ping-ponging between customer service agents from my insurer, Express Scripts, and Accredo after discovering the enormous debit from my account. (Neither my invoice nor the account portals at Express Scripts or Accredo contained the name SaveOnSP.) I was transferred so many times in my quest to appease the strange gods that rule customer service call centres — who demand that you give them your member ID, Social Security number, date of birth, Zip code, and sacrifice of the first born, as well as shriek "operator" repeatedly into the void — that I can't recall which representative told me that they didn't show me as being enrolled with SaveOnSP.
They also claimed that I was not a member of the co-pay assistance programme, which I had been a part of for more than a year and was funded by AstraZeneca, the company that makes my prescription, osimertinib, which is marketed as Tagrisso. Like many pharmaceutical firms, AstraZeneca provides a range of financial aid programmes to help people pay for pricey prescription drugs. For Tagrisso, which has a retail price of $14,000 a month, the programme in which I'm enrolled offers up to $26,000 per patient annually.
The Post was then informed by a SaveOnSP official that "Plan participants join up independently with copay assistance programmes, not through SaveOnSP; SaveOnSP monitors consenting Participants' pharmacy Accounts on behalf of Plans."
AstraZeneca programme
The AstraZeneca programme had been billed by my old insurer, and the money they got was put toward my deductible; my insurance plan then paid for the balance of the medication. They had initially done the same when I converted to Express Scripts.If any of the math seems to defy logic, it's because insurers and pharmaceutical corporations negotiate deals that are highly guarded trade secrets. It is certain that they are not purchasing my medications at full retail cost. Although the monthly premium for my plan was expensive, I had never had to pay an out-of-pocket co-pay, and I felt lucky that everything worked so well.
It took a lot of time out of my cancer-shortened life before Express Scripts agreed to a refund and admitted the error. It took a few weeks until the refund was fully secured after I received a provisional credit, less a bank processing fee that I had to pay for naturally.
The $4,445 debit was manageable for me, but more than half of Americans are unable to cover a $1,000 emergency. For another family, who could have missed a mortgage payment or been unable to put food on the table, this could have had disastrous repercussions.
Then, in the middle of March, I received a call from an agitatedly confused AstraZeneca co-pay assistance programme representative.
The programme had previously been charged $250 per month in co-pay assistance for a total of $3,000 annually; now, it was being charged $4,500 per month. Had I switched insurers? She became quite quiet and stopped questioning when I added, "A third party is now altering my benefits." I needed to know what had happened and what to expect at this point.
Drug Channels Institute.
I had become involved in an increasingly exploitation-focused plan, as I would later discover from long-time industry watcher Adam J. Fein, founder of Drug Channels Institute. Pharmacy benefit managers (PBMs) work with covert third-party adjusters, also known as co-pay accumulators and maximizer programmes, to handle prescriptions for "specialty medications," such as biomarker-targeted treatments for lung cancer and other dangerous diseases.
These companies categorise these medications—some of the most expensive on the market—as "necessary" once a plan engages a co-pay accumulator or maximizer.This gives plans the opportunity to take advantage of a gap in the Affordable Care Act: Coverage can be denied for treatments that a plan deems "non-essential," and a plan can change the member's pharmaceutical benefit deductible and out-of-pocket limit to any amount they see appropriate.
Accumulators frequently bill a patient's co-pay assistance programme first, up to the patient's deductible, and then, since they aren't required to do so, double-dip and bill the patient, often with an increased co-payment rate, up to the patient's deductible amount before providing coverage. Fein said, "Maximizers are much sneakier. Before the plan covers the remaining costs, "they collect the maximum amount permissible from the assistance programme" ($4,445 turned out to be the maximum amount chargeable).
Fein claims that "patients are often ignorant of the complex and convoluted benefit design." Sure enough, I found out that my deductible was no longer being paid by my co-pay help. Had the description of benefits for my insurance plans overlooked mentioning this programme? Nope. A third-party maximizer was not mentioned in the information packet I received.So much for comparing insurance quotes like a savvy shopper.
Companies don't identify themselves as accumulators or maximizers, which further obscures the situation. With a focus on "assisting plan sponsors and their participants control the growing costs of specialty pharmaceutical medications," SaveOnSP touts itself as a "cost-saving healthcare solution." PBMs are simultaneously responding angrily to escalating worries. Express Scripts describes its "Out of Pocket Protection Program" as a mechanism "to provide an equal benefit for all members" in a blog page titled "Copay Accumulator Programs Level the Out-of-Pocket Playing Field."
According to the plan sponsors, it is unfair to let one member use outside financing to cover their deductible while requiring the other to pay the full amount out of pocket.
That would be comparable to whining that one person has a wealthy aunt who pays for their care and another doesn't, setting up participants in the scheme against one another in a Hunger Games-style competition. It was claimed that using SaveOnSP would result in a $0 co-pay for my speciality prescription, but I already had one. In addition, it would take me longer to reach my deductible and out-of-pocket maximum, which would require me to pay more for my other medical expenses.
(A SaveOnSP official informed The Post that specialty medicine prices are always going up. Most of those expenses are covered by employer-sponsored health plans. Plans hire SaveOn to put into place plan designs that fully utilise the copay assistance programmes offered by drug manufacturers and guarantee plan participants receive speciality medications for free or at a little cost. SaveOnSP is pleased that the participant obtained a refund for the pharmacy's incorrect charge and received her specialised medications without having to pay for them.
HIV+Hepatitis Policy Institute
Patient advocates like Carl Schmid, the executive director of the HIV+Hepatitis Policy Institute, started telling me similar horror stories. Co-pay accumulators, according to Schmid, "very much feel like extortion." And since patients can no longer afford their medications, adherence decreases.
Additionally, he said, "the out-of-pocket costs patients must incur to satisfy their deductible and any coinsurance are based on the drug's undiscounted, pre-rebate list price, not the pharmacy's actual negotiated price," which was something I hadn't known. Although the rates insurers bargain for are a matter of greater secrecy than Satoshi Nakamoto's identity, we do know they are significantly less than the list price.
The Arthritis Foundation's Anna Hyde, vice president of advocacy and access, was unsurprised by my encounter. She has been hearing from patients concerned about "interruptions in care and whose co-pays were growing" ever since co-pay accumulators hit the market in 2017. The Help Ensure Lower Patient Copays Act, H.R. 5801, was introduced to Congress in November 2021 by Representatives A. Donald McEachin (D-VA) and Rodney Davis (R-IL), along with more than 50 cosponsors. Hyde informed me of this. According to the bill, health insurance plans must apply some payments made by or on behalf of plan enrollees to their cost-sharing obligations. The money that insurance companies take from a patient's co-pay assistance fund, to put it simply, must be applied to the patient's deductible and out-of-pocket limit. Fourteen.
Unfortunately, H.R. 5801 is still pending in the House even though my home state of California is not one of those states. In late August, the US Department of Health and Human Services' May 2020 decision allowing plans to avoid counting co-pay assistance toward deductibles and out-of-pocket maximums was challenged in court by the HIV+Hepatitis Policy Institute in collaboration with the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition. But for the time being, the challenges persist.
Lia, a Georgian who was 49 when she received a lung cancer diagnosis and who preferred to only be identified by her first name out of concern for retaliation from potential insurers, groaned, "It's always a scramble." Similar to me, she uses a speciality drug, and when her insurer switched to a maximizer, she lost her deductible credit, which had a significant effect on the family's budget. She also has a pre-existing ailment that requires a compounded prescription that is not covered by her insurance plan in order to be treated efficiently.
She confessed to me, "I hold my breath every time we switch insurances.
"And we are aware that's not simple!" I punned.This is what we mean when we talk about "living with lung cancer humour."
I soon discovered that I would have to switch my insurance once more after speaking with Lia. The worst part is that SaveOnSP used up all of my $26,000 in aid for the year in just six months, which means I may have to pay much higher drug prices during the interim. How could I possibly get ready? When I called another insurer, I was told that unless I was enrolled in the plan, they couldn't estimate the cost. The representative's best estimate was that I would be liable for 20% of the medication's price, up to $750 each order.
Do you have a contract with a maximizer, then?
The customer service agent confessed, "I don't know. My experience has shown that the knowledge is so compartmentalized that She might not have known because the information is so compartmentalized.
I took up my dog-eared copy of Yuval Harari's "Sapiens" before passing out from exhaustion. Over the summer, I had started reading again about prehistoric foraging communities as a balm against the vicissitudes of Cancerland. One of the younger men would sneak up behind an elderly woman and strike her in the head with an axe when she became "a liability to the band" among the hunter-gatherers of the Aché tribe in Paraguay. Long before I knew that my body's cells were working against me, I had amazed at how far we had gone during my first reading in 2015.
Now, as I considered my alternatives, it dawned on me: I am the elderly woman in the contemporary rendition of this tale, and to a PBM, I am a liability, so until medicine develops a cure, I can anticipate spending countless further soul-crushing hours negotiating insurance benefits. An axe to the head feels preferable at times.
With the help of a grant from the Economic Hardship Reporting Project, this piece was partially funded.
