Patients with multiple sclerosis (MS) and a number of other chronic diseases often face exorbitantly high treatment costs. This can make it difficult to access the prescription drugs, therapies and other treatments they need to manage and control their symptoms and side effects. Profit-driven policies implemented and enforced by insurers and their so-called pharmacy benefit managers (PBMs) only exacerbate this problem.

For those who don’t know, PBMs are essentially the healthcare industry’s middlemen, working between insurers, drug manufacturers, and pharmacies to manage Americans’ prescription drug benefits. While they were designed to control costs and increase access to prescription drugs, PBMs now do the opposite for patients – they increase prescription drug costs and out-of-pocket costs by explicitly limiting, restricting, or denying access to care.

Flawed PBM policies currently tie the fees these insurance groups charge to the list price of prescription drugs. Not surprisingly, this has led PBMs to only cover more expensive drugs rather than their less expensive counterparts that might work just as well for patients at a fraction of the cost. As a result, millions of patients are forced to pay more at the pharmacy to access the prescription drugs and treatments they need to live healthier, happier, and more productive lives.

As if that wasn’t bad enough, PBMs continue to drive up patient out-of-pocket costs by undermining the benefits of policies designed to reduce patient cost burdens, including the 340B program and manufacturer rebates. Instead of sharing these savings to reduce out-of-pocket costs, PBMs simply absorb them to further inflate their profit margins. Vulnerable patients who are simply trying to take and adhere to their doctor-prescribed medications should no longer have to pay out of pocket just so PBMs can continue to reap profits.

The high out-of-pocket costs imposed by unfair PBM policies are one of the reasons I have chosen not to take medication to treat my MS. Although my symptoms can be challenging without medication, at least I am not at the mercy of greedy PBMs who care more about their profits than helping patients in need.

When I visit the MS Facebook group page that I belong to, I am constantly reminded of the challenges that insurers and PBMs create for MS patients. Other patients struggling with MS are always looking to the Facebook community for advice on why their insurer is forcing them to change their medications and what medication they should choose now that their own is no longer covered. The constant changes to PBMs’ drug lists to ensure they remain profitable have real, negative impacts on MS patients.

The path I’ve chosen to not take prescription drugs to treat and manage the symptoms of my MS may be difficult, but at least I don’t have to worry about PBMs ripping me off at the pharmacy or forcing me to change prescriptions because they can save money and increase their profits. Unless Congress takes action to curb and reform the harmful PBM practices that make access more difficult while increasing patient costs and copayments, I can’t imagine making any changes to the way I manage my MS anytime soon.

There is a bipartisan solution called the Delinking Revenue from Unfair Gouging (DRUG) Act that would help protect patients from profit-driven PBM practices. Nevada’s congressional delegation, including Senators Rosen and Cortez Masto and Representative Horsford, should help support and pass the DRUG Act this year to curb PBM abuse that threatens patient access and increases prescription drug costs. Maybe then drug treatment for my MS wouldn’t be so overwhelmingly expensive.