Policy Spotlight: Pharmacy Benefit Managers (PBMs)

The Lupus Foundation of America is dedicated to improving the lives of people with lupus. One of the many ways the Foundation accomplishes this is through advocating for state and federal policy that will help remove barriers to care and access to the medications their doctors prescribe and which they need to live with lupus.

People living with lupus face many barriers to accessing quality, comprehensive, affordable healthcare. In recent years Pharmacy Benefit Managers, or PBMs, have been driving up the cost of medications for people with lupus and limiting access to care.

Insurance companies rely on little-known middlemen, called pharmacy benefit managers (PBMs), who may ultimately decide whether patients can access their medications, where they can pick up their prescriptions, and how much they pay out-of-pocket in the process. PBMs were originally created as transaction managers to help insurers process claims and procure medications from pharmaceutical companies. Now, PBMs control more than 80% of the prescription drug formularies in the United States, acting as system-wide brokers between health insurers and pharmaceutical companies.  They drive up costs by increasing the “spread” between the price they pay for medications and what they require patients to pay at the pharmacy counter, negotiating discounts on medications, yet not passing those savings along to the patients who rely on the medications.

Living with lupus can be expensive as research has shown it can cost over $68,000 annually depending on the severity of the disease. PBM practices should not make it worse!

For people living with lupus, the impact of PBMs is felt both through direct price increases and other barriers patients face when accessing medication. For example, PBMs can limit a patient’s ability to benefit from patient financial assistance programs through policies called co-pay accumulators. PBMs also can require a patient to first try and fail on one medication or course of treatment before they can have access to the medication they and their doctor believe will be most effective. These “fail first” or step therapy policies are not appropriate and a threat to patient health. 

Treating a disease like lupus is not a one-size-fits-all proposition. Getting the right medication at the right time is critical to a patient’s health and quality of life.  Delays or getting the wrong medication can make it difficult to control symptoms, lead to painful disease flares, hospitalization or worse.    

The bottom line is that people suffering from chronic conditions such as lupus should have access to the medications they need when they need them, and any savings negotiated by PBMs should be shared with patients at the pharmacy counter.  We urge Congress and states to take action and support lupus patients by enacting common-sense PBM reforms - reforms that enable patients to benefit from discounts, that reduce artificial barriers to treatments and, importantly, shed light on PBM practices that too often place profit before patient care.