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What is copay assistance?

To help temper high prescription costs, many individuals living with chronic disorders, including primary immunodeficiencies (PI) or inborn errors of immunity (IEI), receive copay assistance. These programs are offered by charities, nonprofits, and manufacturers of specialty medications to offset the out-of-pocket medication costs for qualifying patients. Typically, individuals that qualify for copay assistance are the most financially vulnerable patients. The amount covered by copay assistance is intended to be counted toward an individual’s insurance deductible or out-of-pocket maximum, decreasing the amount of money an individual spends out of pocket before their insurance benefits kick in.

Unfortunately, over the past several years, IDF has seen a rise in the prevalence of insurance copay accumulator programs, which do not allow copay assistance to count toward deductibles or out-of-pocket maximums.

How do copay accumulators affect prescription costs?

Copay accumulator programs eliminate the long-term benefit of copay assistance to patients. They limit copay assistance to staving off the high costs of medications in the short term, but once the limit for the copay assistance program has been reached, individuals then must pay their full deductible or out-of-pocket maximum before their insurance benefits cover medication costs.

Insurance providers argue that copay assistance leads patients to choose brand name drugs over generic equivalents, leading to higher overall prescription costs. However, 99.6% of copay assistance is used for branded drugs without a generic alternative. Punishing patients who rely on drugs without generic alternatives is not fair.

It also is not fair that copay accumulators allow for double dipping, as the insurance deductible or out-of-pocket maximum is essentially paid not once, but twice. This double dipping is the basis of the lawsuit brought by the HIV+Hepatitis Policy Institute, the Diabetes Leadership Council (DLC), and the Diabetes Patient Advocacy Coalition (DPAC). They argue that insurance companies are receiving more payment than they are entitled to under the Affordable Care Act (ACA) cost-sharing caps.

Nineteen states and Puerto Rico have planned copay accumulators in state-regulated health insurance plans.
Nineteen states, the District of Columbia, and Puerto Rico have
banned copay accumulators in state-regulated health insurance plans.

What can you do?

The Immune Deficiency Foundation (IDF) is closely monitoring legislation addressing copay accumulator programs at the federal and state levels. Nineteen states, plus Puerto Rico and the District of Columbia, have banned copay accumulators. Other states have bills pending, including Pennsylvania

On Nov. 1, 2021, a bipartisan group of Representatives have introduced H.R. 5801, the Help Ensure Lower Patient (HELP) Copays Act, to ban copay accumulators at the federal level. The same legislation was reintroduced as H.R.830 in the U.S. House of Representatives on Feb. 6, 2023, and a companion bill, S.1375, was introduced in the Senate on April 27, 2023. Get copay accumulators banned:

  • Raise awareness on social media using the #AllCopaysCount hashtag.
  • Make your voice heard on copay accumulators by contacting your legislators in support of S.1375/H.R.830!

Contact legislators

Copay Accumulator News and Resources

Update - Support the HELP Copays Act and fight unfair copay accumulators (May 2, 2023)

Patient groups file suit to end policy that prohibits copay assistance from counting toward patients' out-of-pocket spending (Aug. 30, 2022) 

Patient Welfare at Risk: HHS Proposed Rule Will Limit Applicability of Co-pay Assistance Programs (March 2, 2020)

IDF Letter of Support for HB2515 / SB1596 in Virginia (Jan. 28, 2019)