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To help temper high prescription costs, many individuals living with primary immunodeficiency diseases (PI) receive co-pay assistance. Many of those receiving assistance enroll in the co-pay assistance programs offered by the manufacturer that produces their specialty medication. This assistance is extremely helpful to those who would be required to pay their entire annual deductible or out-of-pocket maximum in the beginning of their plan year. The amount covered by these programs is intended to be counted toward the individual’s deductible or out-of-pocket maximum, decreasing the amount of money one must spend before their benefits kick in for the year.

Unfortunately, over the past several years, we have seen a rise in the prevalence of co-pay accumulator programs. These programs are a health insurance benefit design option in some plans that stipulate that payment from manufacturer assistance programs are not to be counted toward individuals’ deductibles or out-of-pocket maximums, thus eliminating any long-term benefit to the patients. While they would stave off high costs of medications in the short-term, once the limit for the co-pay program has been reached, the beneficiary would then have to pay their full deductible or out-of-pocket maximum for the year before their benefits would begin to cover their medical costs.

Instead of allowing manufacturer assistance programs to alleviate the financial burden of high cost specialty medications, co-pay accumulator programs ensure that the burden is merely postponed. This is not fair to people who rely on these expensive specialty medications for which there is no generic equivalent. It also is not fair that this allows for double dipping since the deductible or out-of-pocket maximum is paid not once but twice.  

The Immune Deficiency Foundation (IDF) is closely monitoring legislation addressing co-pay accumulator programs across the country.

Additional Information and Resources

IDF Letter of Support for HB2515 / SB1596 in Virginia