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Copay Assistance Is a Lifeline for Many

With deductibles and out-of-pocket costs soaring, many patients rely on financial assistance from drug companies and non-profits to access their medications. This assistance helps patients with serious and chronic illnesses such as cancer, arthritis, multiple sclerosis, hemophilia, and HIV/AIDS afford and adhere to their medications.


But PBMs and Insurers Are Cutting Off This Lifeline

Unfortunately, many insurers and pharmacy benefit managers (PBMs) implement policies that make it impossible for patients to afford lifesaving medications, even when they have insurance. Recently insurers and PBMs have stopped counting the amount provided by copay assistance programs from charitable foundations and manufacturers toward a patient’s deductible and out-of-pocket maximum. This is referred to as a “copay accumulator adjustment” policy.

Insurers and PBMs continue to charge patients as if they have not been paid, despite collecting the payments from patient copay assistance, driving higher profits, while patients go without necessary medications.

Many employer-sponsored health plans also deem certain critical and life-saving prescription drugs as “non-essential,” because of a loophole in the Affordable Care Act which significantly increases out-of-pocket costs for patients.


The Most Vulnerable Patients Are Hurt the Most

These policies harm individuals with serious and chronic conditions, making it difficult or impossible for them to get the medications they need. Most patients are caught off-guard several months into the plan year when their financial assistance has run out, and they learn that they have not met their annual deductible. When they attempt to refill a prescription or get other health care, they may be faced with a bill for thousands of dollars.

By the time a person with a chronic illness is in a position to be using copay assistance to help them afford a high-cost medication, they have already exhausted other options and gotten approval from the PBM and/or insurer to fill their doctor’s prescription. Of people who depend on copay assistance programs, 69 percent make less than $40,000 a year, leaving the most financially vulnerable patients at risk of losing access to necessary health care.

When people with chronic illness are unable to adhere to their treatment, they risk worsening their health—in some cases, irreversibly. These practices undermine coverage for pre-existing conditions, hurt patient access to medicines, decrease drug adherence, and even cost our health care system more money.


Regulatory Action

The Centers for Medicare & Medicaid Services (CMS) can reverse a previous rule that allowed health insurance plans to adopt copay accumulator adjustment policies. Learn more.


Congress has the opportunity to pass the bipartisan Help Ensure Lower Patient Copays Act (HELP Copays Act), legislation created to stop abusive practices of PBMs and health insurers. Learn more.


States have authority to block accumulator adjustor policies in state exchanges and certain private health insurance plans. Many states have already acted to protect patients. Learn more.

3 Ways Policymakers Can Act

How Does It Work?


When patients shop for and choose an insurance plan, the insurer must provide detailed information up front about all the policies and costs related to the plan. Sometimes, insurance companies and PBMs use complicated and confusing language to describe copay accumulator adjustment policies, making it difficult for patients to know about these programs and anticipate the impact they might have on their costs.

For months, patients will use their copay assistance to pay for their prescriptions without issue. At some point, their assistance runs out. Patients then learn that the insurance company or PBM has not been counting the copay assistance towards their deductible or cost-sharing limits, forcing them to pay the full cost for their drugs.


As a result of these programs, many patients abandon their medication because they can’t afford it. One study concluded that more than 70 percent of patients who were faced with paying more than $250 for their prescription did not pick them up.

Unfortunately, the cost burden on patients has increased in recent years as higher cost sharing has become more prevalent in insurance benefit design, particularly in high deductible health plans (HDHPs), which feature lower premiums but higher deductibles.

Ultimately, those least able to afford high premiums often select HDHPs, leaving them with unaffordable out-of-pocket costs for critical health products and services, such as prescription medicines. For patients with serious chronic conditions, these costs can stand in the way of treatment.

About Us

The All Copays Count Coalition comprises more than 80 national 501c3 non-profit, non-partisan patient advocacy and provider organizations representing millions of people living with serious, complex, chronic illness. The people we represent need full and ongoing access to medical care, including specialty medications, to treat their conditions and to keep them healthy. They rely on health insurance to protect them from high out-of-pocket costs and ensure they can get the care they need. Insurers are using new schemes to pocket support intended to help patients. We are working to ensure that all copayments made by or on behalf of a patient count toward their deductible and out-of-pocket limit – and that patients can access the medications they need.

Learn More