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The Immune Deficiency Foundation (IDF) has led and supported advocacy efforts at the federal level to address the practice of insurers, in effect, discriminating against people with chronic conditions by only offering plans with high coinsurance for specialty tier medications.

Coinsurance for high-tier specialty medications, including immunoglobulin (Ig) replacement therapy, can be as much as 50% of the cost of the medication. The use of coinsurance, rather than flat fee co-pays, means that families generally do not know how much their portion of the cost of the medication will be until they access their treatments. They are not able to plan for their expenses and often have very large bills in the first few months of the year before they meet their deductible.

A 2014 IDF Health Insurance Survey of people with primary immunodeficiency diseases (PI) found that approximately one-third (1/3) of patients reported that they had skipped life-sustaining treatments for various reasons, including the fact that they could not afford the out-of-pocket costs required by payers. This is not only a challenge for people with PI but also for individuals living with many chronic conditions that require specialty medications. Nationally, payments for cost-sharing have risen exponentially across the U.S. since 2004 and have rapidly outpaced wages. In addition, the use of drug deductibles across the U.S. increased 100% between 2012 and 2015 (23% to 46%) in commercial health plans. Not surprisingly, one in five prescriptions are abandoned while the patient is still paying the deductible. Some are unable to afford treatments at all.

IDF is closely monitoring the federal landscape for the development of federal legislation addressing high coinsurance.

Click here to learn about some of IDF’s state-based efforts to address the burden of high coinsurance.