The Immune Deficiency Foundation (IDF) has led and supported advocacy efforts to address the practice of insurers, in effect, discriminating against people with chronic conditions by only offering plans with high co-insurance 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 patients 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 a challenge for individuals with PI and many others living with 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.
ACT for Nevada
In 2016, IDF established Affordable Co-pays and Treatments (ACT) for Nevada, a coalition of 10 patient organizations formed to address the discriminatory practice employed by Nevada based insurers in which people with chronic illnesses, including PI, are forced to pay unfair portions of healthcare costs and are potentially driven out of their current plans.
Through ACT for Nevada, IDF worked to craft legislation to ensure Nevadans would have options when selecting a health plan by requiring insurers to have at least 25% of the plans offered at each coverage level provide a flat dollar co-pay for all prescription medications. The legislation, SB 436, was introduced in the Nevada legislature in 2017 but did not pass that legislative session. Efforts continued in 2018, when the state legislature was not in session, through meeting with the Insurance Commission to urge for regulatory change and providing informational testimony to legislators in Las Vegas. In 2019, IDF will support Nevada-based organizations to continue to address discriminatory health insurance plan practices in the state.
Iowa Co-pay Choice Coalition
In 2017, IDF lead the Iowa Co-pay Choice Coalition, a coalition of 12 Iowa-based patient and provider groups, with the aim of passing legislation to address cost-sharing challenges. This legislation ensured that people with chronic conditions in need of expensive treatments have a choice of health insurance plans that offer flat fee only co-pays with no deductibles for medications on all tier levels. The coalition developed materials, implemented a robust grassroots digital campaign, hosted an advocacy day in the state capital, and got co-pay choice legislation, SSB 3004, introduced in the 2018 session. Unfortunately, the legislation was not put up for a vote and therefore didn’t pass the legislature. IDF will continue to support local Iowa organizations to continue the grassroots efforts to pass co-pay choice legislation.
In addition, IDF has been active in many state access to care coalitions (IL, MI, NJ, OH, OR, and PA) that have proposed specialty tier legislation. Actions have included sending targeted alerts, meeting with legislative leadership and submitting written testimony.
Additional Information and Resources