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Pharmacy benefit managers (PBMs) regularly insert clauses, or “gag orders,” into their contracts with pharmacies barring them from informing customers that the retail cost of their prescription is less than their co-pay if that prescription is filled through their insurance. This means that anyone filling a prescription may end up paying more than necessary.

People with primary immunodeficiency diseases (PI) are born with part of the body’s immune system missing or functioning improperly that leads to an increased vulnerability to infections, which can be recurrent, unusually severe, and/or won’t clear up. Because of this increased susceptibility to additional infections, or comorbidities, individuals with PI are often on several prescription medications, in addition to the immunoglobulin (Ig) replacement therapy they must take for the rest of their lives. This lifesaving therapy, alone, costs on average $7,500 to $10,000 per month.

Due to the high cost of Ig therapy, every additional medication needed to treat comorbidities adds to the financial burden on patients and increases the likelihood that the most vulnerable will forego care. In fact, according to IDF’s 2014 Health Insurance Survey of people with PI, 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. These individuals put their lives at risk because of they couldn’t afford the high cost of their treatment.

To address this, gag order legislation is being introduced across the country. This legislation bars PBMs from inserting these clauses into their contracts with pharmacies, thus allowing pharmacists to disclose cheaper purchasing options to customers filling prescriptions. These bills sometimes include language barring kickbacks as well, which means that pharmacy benefit managers are not allowed to charge a co-pay for a prescription that is higher than the retail cost of the drug. IDF has and will continue to support gag order legislation across the country.