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How Copay Accumulators Affect Individuals with Rheumatic Disease

May 17, 2023 | Take Action


It is important to stay up to date about health policies or plans that might impact your ability to access and afford rheumatic disease care. In this blog post, we take a closer look at copay accumulators and cover what exactly they are, how they harm individuals with rheumatic disease, and what is being done to reform this practice.

What are copay accumulators?

Many people who take expensive specialty medications to manage rheumatic disease receive copay assistance coupons from drug manufacturers to cover part of the cost. Recently, insurance companies have been using copay accumulator adjustment programs (CAAPs) also known as “copay accumulators” to prevent this co-payment assistance from counting toward a patient’s deductible or maximum out-of-pocket expense.

How Copay Accumulators Affect Individuals with Rheumatic Disease

Here’s an example of how it works: Jane needs a prescription drug that costs $20,000 per year and is responsible for paying $5,000 out of pocket. The rest is covered by her insurance plan. The drug manufacturer offers a copay card that picks up $1,500 of the cost which also counts towards her plan’s annual deductible and out-of-pocket maximum, so Jane’s total out-of-pocket costs are only $3,500. With a copay accumulator in place, that $1,500 copay card would still be accepted, but once it runs out, Jane is responsible for covering the entirety of her deducible before her insurance kicks in. So, where does that copay assistance go? It’s effectively pocketed by the insurance company. Jane still has to pay $5,000 toward her deducible after the copay card runs out, while the amount paid by her insurer for the drug is reduced by $1,500.

How exactly do copay accumulators impact people with rheumatic disease?

Copay accumulators disproportionately impact the most vulnerable patients who rely on certain high-cost specialty medications. When the manufacturer assistance runs out for these patients, some will be unable to afford their prescriptions and will be too far from meeting their annual deductible to receive assistance from their insurer. This will inevitably lead to some patients rationing their doses or even abandoning treatment altogether. Research shows that over 70% of new patients opt not to fill a prescription with a copayment of $250 or more.

Insurers claim that copay accumulators incentivize patients to switch to lower-cost generics or biosimilar drugs, but few of these alternatives exist for people with rheumatic diseases.  In fact, an overwhelming share of medicines that are subject to copay accumulator programs (95%, according to one analysis from the National Hemophilia Foundation) have no generic or biosimilar equivalents, leaving patients without any alternative.

Insurance companies also claim that copay accumulators are necessary to manage drug costs – and blame manufacturers for setting high prices. But it is patients who lose out when copay assistance can no longer count towards their health plan’s deductibles or out-of-pocket maximum. Copay accumulators do nothing to address the root cause of high drug pricing — they simply shift more of the financial burden to patients.

What is being done to fix copay accumulators?

Currently, the bipartisan Help Ensure Lower Patient (HELP) Copays Act (H.R. 5801) has been introduced in Congress and would prohibit insurers from implementing copay accumulators.

You can join ACR in supporting H.R. 5801 and protect yourself and others from co-pay accumulators that drive up out-of-pocket prescription drug costs by taking action now


Have you had trouble accessing or affording treatments for rheumatic disease due to copay accumulators, insurance prior authorization or other reasons? The ACR and Simple Tasks team want to hear from you.

Help to advocate for better treatment access for millions of Americans with rheumatic disease by completing a short survey.

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