Written by Matt DeGooyer, Lupus Foundation of America
Lupus affects over one million Americans, with around 16,000 cases being diagnosed each year. It is an autoimmune disease that causes the immune system to mistakenly attack healthy tissue in the body. Over time, people with lupus experience joint degradation and inflammation of tissue, muscles, and organs. There’s no cure for lupus, so patients must work closely with their physicians to manage the disease with medications that control incorrect immune system activity. Over the past several years, lupus patients have faced barriers to getting the medications they need when they need them, all while out-of-pocket spending has risen. This is why the Lupus Foundation of America is leading national and local policy initiatives to reduce barriers to care and ensure people living with lupus can get the medications their doctors prescribe.
Insurance companies rely on little-known middlemen called pharmacy benefit managers (PBMs), who may ultimately decide whether patients can access their medication, 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 act as system-wide brokers between health insurers and pharmaceutical companies, and they drive up patient costs by increasing the “spread” between the price they pay for medications and what they require patients to pay at the pharmacy counter. A 2021 study by the University of Southern California, for example, found that PBMs increase the cost of diabetes drugs by up to 50%!
Last legislative session, Washington State lawmakers introduced the ‘Share the Savings Bill’, which, if passed, would have resulted in patients paying less out of pocket for their prescriptions. At its core, the bill would have eliminated spread pricing by insurance companies or PBMs and required any savings or rebates in the medical supply chain to be shared directly with the patients at the pharmacy counter. The Lupus Foundation of America will continue to lead our state’s effort to pass meaningful reform legislation, so patients benefit from medication savings.
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 require a patient to 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 and lead to painful disease flares, permanent organ damage, hospitalization or worse.
A study published in 2021[1] analyzed the annual cost burden for patients living with Lupus for one year after their diagnosis. The study found that for those with “mild Lupus” the cost burden was $13,415. For those with “moderate Lupus,” the burden was $29,512. And for those with “severe Lupus,” the burden was $68,260. In addition, the disease can limit a person’s ability to do the everyday things most people take for granted – going to school or work, getting through the day without pain or simply hugging a loved one. Lupus is already difficult and expensive. PBM practices should not make it worse!
The good news is there is federal bipartisan support to regulate PBMs, increase access to care and reduce costs. Congressional action could soon insulate patients from unpredictable swings in out-of-pocket costs. Other reforms would implement greater oversight and regulation of PBM activity, requiring PBMs to disclose their earnings while bringing more transparency to their business practices overall.
We know patients and lawmakers are ready to take action for a more equitable healthcare system— this includes making common-sense changes to a PBM industry in which profit can too often come before patient care and where savings are not passed onto patients. Whether through national or state policy reforms, we urge our lawmakers to take action to help those living with lupus – and millions of other Americans living with serious and chronic conditions. We deserve better.
Matt DeGooyer is the Senior Regional Director of the PNW Region of the Lupus Foundation of America, which works to improve the quality of life for all people affected by lupus through programs of research, education, support, and advocacy.
