Controversial “copay accumulator programs” allow insurers to double-dip on patient deductibles. Credit: Getty
On Nov. 19, 2024, I was diagnosed with polycythemia vera, a rare blood cancer. The day was a blur, but I remember my hematologist, Dr. Fadi Haddad at Houston’s MD Anderson Cancer Center, drawing a picture of my pelvic bones on medical paper to explain my body’s blood production. A gene mutation was causing my bones to make too much red blood, he told me. With treatment, I had perhaps 30 years until my marrow started to give out. After that, treatment could offer perhaps five to seven more years. Then acute myeloid leukemia would set in.
That timeline suggested I could live into my 80s — not bad, all things considered. It assumed, however, access to a specialty medication called Jakafi that would cost me about $9,000 per month (you read that right: per month). Dr. Haddad suggested that I apply for a copay-assistance card through Incyte, the drug’s manufacturer. The card would pay my insurer for the Jakafi for the first couple months of each year and meet my deductible, after which insurance would kick in. I did, and soon a pill bottle arrived in the mail that delivered extraordinary results.
But America’s byzantine for-profit health system was, it seems, determined to hinder my healing. Specifically, my health insurer insists that the money paid to it by the drug-manufacturer through my copay assistance card doesn’t count toward the minimum cash deductible I have to meet. This is a clear violation of Texas state law.
Jakafi was a miracle drug. Before the drug, my hemoglobin and hematocrit numbers had been so high that every couple weeks, I needed a therapeutic phlebotomy — “bloodletting,” the ancients might have called it. I had terrible night sweats. My spleen and liver were enlarged enough that they could be felt under my skin. With Jakafi, my numbers stabilized, the night sweats disappeared, and the size of my internal organs normalized. Eventually, I even got cleared to play pick-up basketball again.
Best of all, the manufacturer’s copay card helped me reach our out-of-pocket maximum by late January. I say “best of all,” because my health plan has a high deductible and a high out-of-pocket maximum, both of which tend to go up every year. I have a wife and two small children, and it would almost be easier psychologically speaking to forgo treatment than to leave them with a mountain of medical debt. So when I sailed through my first year of treatment without paying a dime for Jakafi, I felt like I’d dodged a bullet. By fall 2025, I rarely thought about my blood cancer at all.
Last March, however, I received a bill from Anthem Blue Cross Blue Shield, my insurer, for $4,793.99 for a 15-day supply of Jakafi. I called them immediately, and they told me that the funds on Incyte’s copay card had been exhausted. Insurance had covered the first two months of medication, the Anthem representative said — which didn’t quite make sense, if I hadn’t met my deductible, but conversations with health reps rarely make sense. I needed to re-enroll for the copay assistance program, Anthem told me.
Incyte representatives, however, assured me that reenrollment happened in January automatically. They had covered those months of medication, not Anthem.
I spent more than 15 hours on the phone over the next few weeks talking to an endless series of Anthem agents and employees at Carelon Rx, Anthem’s pharmacy arm. Finally, someone at Carelon Rx mentioned that I was on a “copay accumulator program.” So far as I knew, I had never heard that combination of words uttered before. A quick internet search explained why.
Copay accumulator programs seem to be based on the belief that patients have to pay their portion of their plan’s deductible and out-of-pocket maximum personally before insurance covers subsequent medical bills. No stipulation of this sort is likely to turn up in the documents of your health plan. Yet this is the logic of how copay accumulator programs work, and many insurers avail themselves of it.
In my case, Incyte’s copay card had indeed paid for my January and February orders of Jakafi. But because they had placed me in a copay accumulator program, Anthem never applied that money to my deductible or out-of-pocket maximum. They behaved as if that money had never been paid. Which meant I had to come up with the more than $10,000 deductible before insurance would kick in — or forgo my medication.
However, that internet search turned up another important detail: what Anthem was doing appeared to be illegal. Colorado (where I work), Texas (where I live), and 23 other states have written stronger legislation, outlawing copay accumulator programs entirely. The Colorado law, enacted in 2025 and often called the “Copay Accumulator Bill,” is a typical example. It requires “health insurers and PBMs to count any amount paid by the patient or on behalf of the patient by another person, including through a cost-sharing assistant program, toward the patient’s annual out-of-pocket limit and any cost-sharing requirement, such as deductibles, under the patient’s health benefit plan.”
The reasons for laws like Colorado’s are clear enough. No matter who pays a patient’s deductible and out-of-pocket max, her insurance company still gets paid. If another party pays an amount equivalent to that patient’s out-of-pocket max and the insurance company then makes the patient pay that amount again, it has doubled her out-of-pocket max without telling them.
In some states, the use of copay accumulator programs is largely unregulated. Worse still, the novel application of a 52-year-old federal law allows insurance companies to leverage the programs against patients with certain types of health coverage — even in states where the practice is banned.
The Employee Retirement Income Security Act, or ERISA, was originally meant to ensure that employee benefit plans met certain minimum standards nationwide. To do that, Congress crafted ERISA to preempt every state law involving employee benefit plans. The law’s “saving clause” allows states to regulate insurance — but “self-insured” employer plans, in which the employer rather than the insurance company pays for medical claims, do not count as insurance. This distinction allows some health plans to avoid copay accumulator bans even in states that have them.
Thankfully, my employer offers a fully insured health plan, so Colorado’s SB 23-195 does apply to me. That explains why I received my Jakafi without trouble after the law went into effect Jan. 1, 2025. But by Mar. 3, 2026, when I received the bill for $4,309.96, Anthem had adapted. Its new approach is to delay and obfuscate.
At any rate, that’s the conclusion I had drawn by Mar. 17, when I filed a grievance with Anthem and began a parallel process through our benefits administrator. In my appeal letter, I meticulously exegeted the Colorado law: Anthem had claimed that “CO-195 is not applicable to this member because they live in Texas.” The law says, “a covered person,” I wrote, not “a covered Coloradan.” It says you must “include any amount paid” on my behalf as counting toward my deductible and out-of-pocket maximum. Anything else is “double-dipping” and “exactly what the state’s Copay Accumulator Bill outlawed.”
Therefore, I told them, I should be reimbursed for funds spent after my deductible and out-of-pocket maximum were met — and that happened back in January.
Anthem says they will respond to a grievance or appeal within 30 days. In my case, it took them until May 19, when they finally followed up with our benefits administrator: “We have received confirmation from our team that the Out-of-Pocket (OOP) Limit of $11,000.00 has been fully satisfied,” the letter read. I thought for a moment that I had won. Then it added a qualifier: “with no overpayment identified on the account.”
No overpayment. What sort of creative accounting allowed them to come to that conclusion? I wondered. In the months since Anthem declined to honor the Incyte copay payments, I’d incurred other medical expenses, which I’d been forced to pay out-of-pocket — I was owed reimbursement for these expenses. Then I noticed an Excel sheet attached to the email, one probably requested by our benefits administrator and forwarded to me. It included columns titled “Accumulated Amount,” “Running Total,” and “Reason” among others. Each time Anthem processed an order of Jakafi paid for by the drug’s manufacturer, the running total for my out-of-pocket maximum would jump by more than $5,000. But a day or two later, that amount would mysteriously be removed. On Jan. 20, my total was $5,596.25. On Jan. 21, it was $162.11. On Jan. 30, it was back up to $5,596.25 — and on Feb. 4 it was $430.39. Under the “Reason” given for the Jan. 21 and Feb. 4 deductions, Anthem had simply written, “Miscellaneous adjustments.”
I knew very well what “miscellaneous adjustments” kept these Jakafi orders from counting toward my deductible or out-of-pocket maximum. I was still on a copay accumulator plan. Anthem had changed nothing. Instead, a hospital visit for my youngest daughter had put us over the $11,000 threshold, meeting our family’s out-of-pocket maximum. That we could pay the hospital’s bill over several years at zero interest was little comfort. The bill should have been Anthem’s to pay — and it was hardly the only one. By my calculation, Anthem still owes me more than $10,000.
If my story were unusual, I could chalk it up to clunky administrative processes or a missed keystroke somewhere. It turns out, however, that one of my coworkers is having the same trouble with Anthem. A member of that coworker’s family suffers from a rare autoimmune disease. She, too, needs expensive medication. That drug’s manufacturer gave them a copay assistance card worth thousands. Anthem absorbed — in my opinion, stole — that money, too. In my small department, Anthem had put two of us on copay assistance programs, thereby absorbing more than $20,000 of money intended for the treatment of people with rare diseases.
The noncompliance of insurance companies with state copay accumulator bans has received little media attention, but the industry has every incentive to skirt the law. Johnson & Johnson sued Cigna, another insurer, for $100 million for appropriating the money J&J gave patients to help pay for their medicines — and that is just one drug company and one insurer. Imagine how much money the American insurance industry is making by secretly doubling the deductibles and out-of-pocket maximums of thousands upon thousands of people.
All of which means that it’s high time that something is done. Congress should address the issues being caused by ERISA, and should pass legislation against copay accumulators: a federal version of Colorado’s SB 23-195 would be a good choice. Americans need a blanket requirement that insurance companies accept any and all money paid on behalf of the patient as counting toward a patient’s deductible and out-of-pocket maximum. Patients also urgently need a recourse to defend themselves when companies openly break the law.
Last month Anthem’s pharmacy manager, Carelon Rx, notified me that the insurance company had come to a decision in my case. Their earlier decision that my out-of-pocket maximum had been met in January has been conveniently forgotten. I now owe them $4,793.99, they said. I spent several more hours on the phone, walking through the details of Colorado SB-195 with two more agents. In both cases, they said they could do nothing except initiate another review, one I can only assume will go nowhere.
I neither have $4,793.99 lying around nor the ability to call an organization to the carpet that insures more than a third of Americans. Thousands of other Americans with rare diseases find themselves in similar positions. We are powerless to defend ourselves against the predatory practices of the health insurance industry, and we need help.