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What is co-pay assistance?

To help temper high prescription costs, many individuals living with chronic disorders, including primary immunodeficiencies (PI) or inborn errors of immunity (IEI), receive co-pay 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 co-pay assistance are the most financially vulnerable patients. The amount covered by co-pay 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, we have seen a rise in the prevalence of insurance co-pay accumulator programs, which do not allow co-pay assistance to count toward deductibles or out-of-pocket maximums.

How do co-pay accumulators affect prescription costs?

Co-pay accumulator programs eliminate the long-term benefit of co-pay assistance to patients. They limit co-pay assistance to staving off the high costs of medications in the short term, but once the limit for the co-pay 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 co-pay assistance leads patients to choose brand name drugs over generic equivalents, leading to higher overall prescription costs. However, 99.6% of co-pay 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 co-pay 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.

Sixteen states that ban co-pay accumulators.
Sixteen states (plus Puerto Rico) have passed
legislation banning co-pay accumulators.

What can you do?

The Immune Deficiency Foundation (IDF) is closely monitoring legislation addressing co-pay accumulator programs at the federal and state levels. Sixteen states, plus Puerto Rico, have banned co-pay accumulators.

As of Nov. 1, 2021, a bipartisan group of Representatives have introduced H.R. 5801, the Help Ensure Lower Patient (HELP) Copays Act, to ban co-pay accumulators at the federal level. Get the HELP Copays Act passed:

You can also sign up for IDF's Action Alerts below to be notified when we need you to contact state or federal legislators in support of legislation banning copay accumulators.

Co-Pay Accumulator News and Resources

Delaware Bans Co-Pay Accumulators (Oct. 26, 2022)

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

Washington State Makes All Copays Count (March 30, 2022)

Support the HELP Copays Act and fight unfair copay accumulators (Dec. 3, 2021)

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

Arizona Bans Co-Pay Accumulator Programs (May 1, 2019)

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