Copay Accumulators

Copay Adjustment Programs 

Imagine an organization graciously awarded you with a scholarship to partially cover the cost of your attendance at a university. What if your school accepted the scholarship money, but still insisted that you pay your tuition in full claiming that they do not count payments made on behalf of you by third parties toward your fees? 

Though it’s unlikely a university would do this, programs used by health insurance companies work in a similar way by excluding third-party payments for medications from counting toward a patient’s deductible or out-of-pocket limits. 

This practice is equally unreasonable and creates an additional financial burden for patients, especially patients with rare diseases, who are already struggling with the high costs of medical care. 

Copay Adjustment Programs: A Harmful Practice for Patients 

Nationwide, almost two-thirds of all ACA individual health plans include copay accumulator policies. 

Many people rely on copay assistance – coupons or charitable assistance from drug manufacturers and non-profit organizations – to afford high-cost medications. Unfortunately, many insurance companies have financial strategies, such as copay accumulator programs, that prevent copay assistance from counting toward a patient’s deductible or out-of-pocket payment limits. 

While copay accumulator programs can reduce costs for insurance companies, they leave patients with unexpected and unaffordable pharmaceutical costs once their copay assistance is exhausted. These programs create higher out-of-pocket costs for rare disease patients’ other required clinical care due to the extended time before deductible and out-of-pocket requirements are met. 

What We’ve Done

State and Federal Policy Efforts 

States and the federal government should ban copay accumulator programs to create a better and safer environment for people who rely on copay assistance to afford their costly medications. Action is needed at both levels since the federal government determines the rules on some types of insurance plans, while state governments have control over others. 

Sixteen states have prohibited health insurance companies from using copay accumulator programs. Learn more about copay accumulator policies in your state here. 

Additionally, H.R. 830, the Help Ensure Lower Patient (HELP) Copays Act is a federal bill introduced this year to protect copay assistance for vulnerable patients by prohibiting copay adjustment schemes. 

View the RARE Foundation’s recent efforts to support state and federal legislation below.  

Legal Action 

In addition to state and federal legislative efforts to ban copay adjustment policies, some organizations and individuals have turned to legal action. A case brought against the U.S. Department of Health and Human Services challenged a federal rule that allowed copay adjustment policies. In February, 2023, the EveryLife Foundation joined an Amicus brief organized by Aimed Alliance that provided the court with a detailed explanation of how copay adjustment policies harm the patient community. 

In September 2023, a federal district court ruled in favor of patients, stating that insurers can no longer implement copay accumulator programs for drugs without generic equivalents. This decision is a positive development for many rare disease patients as it means that copay assistance will now count towards their out-of-pocket maximum or deductible. The decision applies to ACA, ERISA, and state-regulated health plans. 

Following this monumental decision, the EveryLife Foundation signed a letter organized by the All Copays Count Coalition urging the Department of Health and Human Services (HHS) to swiftly issue guidance directing health insurance issuers to implement the decision. The letter also requests that HHS refrain from appealing this critical legal ruling and emphasizes the importance of considering patients’ financial well-being while reviewing and revising related regulations.  

Take Action

See if your health insurance plan has a copay accumulator Policy 

Have you ever been in a situation where your deductible was not satisfied even though you though it should be? Many people are enrolled in health insurance plans with copay adjustment policies without being aware of it. 

Consult your insurance company or employer to see if you are enrolled in a copay adjustment program. 

Share Your Story

Has the cost of your medication impacted you or your family? Have copay assistance coupons or cards helped you afford your medication? Does your health insurance plan have financial strategies that prevent copay assistance from counting toward your deductible or our-of-pocket payment limits? 

Consider sharing your story with us to inform our policy efforts and engagement. Your information will never be shared without your express consent.

Ask your federal and state representatives to restrict copay accumulators 

Sixteen states have prohibited health insurance companies from using copay accumulator programs. Ask your federal and/or state representatives to ban copay accumulator programs. Learn more about copay accumulator policies in your state here.  

Follow the All Copays Count Coalition  

Stay up to date on the latest efforts to restrict harmful copay accumulator policies by following the All Copays Count Coalition. To learn more about the coalition and how you can get involved, click here. 

More Information 

• TAI Report: Copay Accumulator Adjustment Programs  
• All Copays Count Coalition