Written by Molly Murray, President & CEO, Autoimmune Association

Middlemen within the healthcare system, known as pharmacy benefit managers (PBMs), play a significant role in how patients access and afford their prescription medications. However, most patients aren’t aware of the extent to which PBM practices impact their ability to access their treatments and manage their health.

While operating with little to no transparency or regulation within the healthcare system, PBMs drive up the costs of treatment for patients living with autoimmune conditions such as lupus, rheumatoid arthritis, Type 1 diabetes and other complex diseases and create significant barriers to accessing the treatments they need – all while generating greater profits for themselves in the process. PBM practices directly contribute to lower levels of treatment adherence and worsen healthcare outcomes for patients living with autoimmune diseases. Federal and state policy action is needed to protect patient communities from deceptive PBM activities and create more transparency around the way PBMs operate within the healthcare system.

PBMs manage prescription drug benefits on behalf of health insurers, Medicare Part D drug plans, large employers and other payers. PBMs create drug formularies, reimburse pharmacies for patients’ prescriptions, and negotiate rebates and fees with drug manufacturers. However, they rarely pass these savings on to patients. In recent years, patient out-of-pocket costs for prescription drugs have increased despite the fact that manufacturer rebates to PBMs have also increased – demonstrating that PBMs are failing to pass these savings on to patients who may otherwise struggle to afford their medications.

Moreover, these for-profit middlemen fail to take patient or provider preferences into account when creating formularies or determining prices. An evaluation of the 2022 national formulary of the second-largest PBM in the U.S. found that nearly half (46%) of their formulary exclusions had questionable clinical or financial benefits to patients, showing that as a result of PBM practices prescribers can be forced to prescribe treatments that could have adverse financial or medical outcomes for patients.

PBMs have a direct impact on the ability of patients with autoimmune diseases to access their medications. Although patients with chronic conditions, such as many autoimmune conditions, HIV, and cancer, typically require long-term, continuous treatment to slow or prevent the progression of a disease, medicines to treat these conditions are often excluded from PBM formulary lists. When PBMs take such action, it raises out-of-pocket costs for patients and increases the likelihood that patients will not adhere to their medication as prescribed.

Higher out-of-pocket costs are shown to contribute to lower levels of treatment adherence, and higher levels of treatment abandonment – all leading to worse health overall and greater costs for patients and the healthcare system. One study shows 40% of patients abandon their prescription medications at the pharmacy counter when their out-of-pocket costs reach $75-$125. Rates of treatment abandonment increase as prices increase, with research showing that more than 2 of every 3 Americans abandon their prescription medicines when out-of-pocket costs reach $250.

Women account for 80% of the Americans living with an autoimmune disease and we know that the prevalence of select autoimmune diseases, including lupus, rheumatoid arthritis, and Type 1 diabetes, is higher among minority populations. As stakeholders across the healthcare industry seek to advance health equity for all Americans, addressing access and affordability challenges caused by PBM practices will be a critical step.

Recently, progress has been made to rein in the influence of PBMs across the healthcare system. In 2022, the Federal Trade Commission (FTC) requested public comments on the impact of PBM practices on the ability of patients to access and afford their treatments. The Autoimmune Association, alongside 104 other groups representing millions of patients and Americans who live with complex conditions such as HIV, cancer, diabetes, lupus, hemophilia, and mental illness, wrote to FTC Chair Lina Khan detailing how these middlemen negatively impact the health outcomes of patients.  

As federal and state lawmakers and regulators seek to address the burdensome tactics of PBMs and private insurers, it is critical to consider the negative impact of these practices on the more than 24 million patients in the U.S. living with autoimmune conditions. With more than 7% of all Americans living with an autoimmune disease, addressing access and affordability challenges created by PBMs benefits not only patients living with these conditions, but also the broader healthcare system, the economy, and society as a whole.

Molly Murray is the President and CEO of the Autoimmune Association, the world’s leading nonprofit organization dedicated to autoimmune disease awareness, advocacy, education, and research.