Patients living with multiple sclerosis (MS) and a range of other chronic diseases often face exorbitantly high medical costs that can make it more challenging to access the prescription medications, therapies, and other treatments they need to manage and control their symptoms and side effects. Profit-driven policies put in place and enforced by insurers and their so-called Pharmacy Benefit Managers (PBMs) are only making this problem worse. 

For those who don’t know, PBMs are essentially the middlemen of the healthcare industry, working between insurers, drug manufacturers, and pharmacies to manage Americans’ prescription drug benefits. While they were intended to help control costs and improve access to prescriptions, PBMs are now doing the opposite for patients—increasing prescription costs and out-of-pocket expenses by explicitly limiting, restricting, or denying access to care.

Broken PBM policies currently link the fees these insurer-owned groups collect to the list price of prescription drugs. Unsurprisingly, this has incentivized PBMs to cover only higher-cost medications and not their lower-cost counterparts that could work just as well for patients and at a fraction of the cost. As a result, millions of patients are being forced to pay more at the pharmacy to access the prescription medications and treatments they need to live healthier, happier, and more productive lives.

As if that wasn’t bad enough, PBMs are forcing patients’ out-of-pocket costs ever higher by undermining the benefits of measures intended to help alleviate patients’ cost burden, including the 340B program and manufacturer rebates. Instead of sharing these savings to help reduce out-of-pocket costs, PBMs are just absorbing them to further inflate their profit margins. Vulnerable patients, who are simply trying to get on and stay on their doctor-prescribed medications, should not have to pay more out of pocket just so PBMs can continue to rake in the profits.

The high out-of-pocket expenses created by unfair PBM policies is one of the reasons that I chose not to go on medications to help manage my MS. While my symptoms without medication can be challenging, at least I’m not at the whim of greedy PBMs that care more about protecting their bottom line than they do helping patients in need.

I’m constantly reminded of the challenges that insurers and PBMs create for MS patients when I visit the MS Facebook group page that I belong to. Other patients struggling with MS are always seeking advice from the Facebook community about why their insurer is making them switch medications and which medication they should choose now that theirs is no longer covered. PBMs’ constant formulary changes to ensure they remain as profitable are having a real, negative impact on MS patients. 

The road I’ve chosen in not taking prescription medications to treat and manage the symptoms of my MS may be a difficult one, but at least I don’t have to worry about PBMs gouging me at the pharmacy or forcing me to change prescriptions based on what would help them save money and increase profits. Until Congress does something to rein in and reform the harmful PBM practices that undermine access while increasing costs and out-of-pocket expenses for patients, I cannot see myself making any changes to how I’m managing 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, as well as Representative Horsford, should help support and pass the DRUG Act this year to reduce the PBM abuse that threatens patient access and increases prescription drug costs. Maybe then, managing my MS with medications wouldn’t be so overwhelmingly expensive.