There’s no question that lupus is a challenging, painful and scary condition. It’s an often-debilitating, chronic autoimmune disease that pits the immune system against the body’s healthy tissues. It can affect your joints, skin, brain, heart, lungs and just about every other vital organ in your body. Lupus can be fatal and there is no cure.

As we celebrate Lupus Awareness Month, it’s important to remember that lupus patients throughout Oregon rely on timely medications to manage their condition and maintain their quality of life. That’s why our state’s local pharmacies are so essential. They provide people access to the care they need when they need it. But now, many pharmacies are under serious threat—and our most vulnerable patients along with them.

Over the past 14 years, the number of Oregon pharmacies has decreased more than 26%. Accessing medications or treatments should be simple, but unfortunately it’s only becoming more difficult. Why is this happening? One reason involves middlemen insurers called pharmacy benefit managers (PBMs).

To put it simply, these PBMs manage prescription drug benefits and act as a go-between within the drug manufacturing and distribution processes.

Unfortunately, there’s a major flaw with these PBMs. They lack sufficient transparency and oversight, allowing them to take advantage of the United States healthcare system. As the middlemen, PBMs can influence nearly every aspect of the prescription drug industry. They determine the medicines insurers cover, develop pharmacy access networks, set out of pocket costs and they negotiate rebates from drug manufacturers. But instead of passing these negotiated savings along to patients, PBMs pocket the difference for themselves. This essentially inflates the cost of doing business for everyone in healthcare.

Additionally, PBMs can push patients away from local pharmacies, directing them instead to dispensaries owned by PBMs themselves. They entice people to abandon their community pharmacies by offering apparent discounts to use alternative, often mail-in, pharmaceutical services. But little do patients know this tactic strips pharmacies of a key revenue stream and forces many of these small businesses to close.

These closures can create pharmacy “deserts”—entire communities without ready access to prescription drug dispensaries. When patients’ local pharmacies close, they have to find a far more inconvenient alternative. For instance, the closing of Len’s—a local pharmacy—meant that John Day residents had to travel up to 70 miles to get their prescriptions. Pharmacy deserts present a major problem for lupus patients, who often suffer from severe joint or muscle pain and struggle to travel long distances.

Without access to medications, lupus patients run the risk of gaps in treatments. This poses several risks, including flare-ups in illness or a decrease in the effectiveness of drugs. These vulnerable patient groups deserve access to proper care. Otherwise, they run the risk of their symptoms getting worse and that increases the cost of health care overall.

Currently, lawmakers in Oregon are beginning to take notice and are considering regulatory change. The HELP Copays Act, for instance, reigns in PBMs’ attempts to pocket patient copay assistance by excluding financial aid from counting toward a patient’s deductible. Essentially, the bill prevents patients from being overcharged, leaving more money in their pockets. This type of reform is long overdue.

May is a time to recognize lupus patients. They already face so many difficulties and accessing their medications should not be another. We need our lawmakers to continue advocating for Oregon patients to ensure they have the proper treatment and care to manage their symptoms by demanding greater transparency and supporting our local pharmacies. That starts by enacting PBM reform.