Letter to the Editor: Fixing the problem of pharmacy benefit managers will save lives

The only thing more difficult than living with a chronic health condition is watching your child suffer from one.

That is the unfortunate reality for millions of parents in the United States, and I count myself among their ranks. We all seek coping mechanisms for dealing with this reality. For me, that was a matter of turning my anguish into action and pursuing a mission to not only help my son but thousands of others. This has involved, by necessity, taking on the companies who determine the accessibility and cost of the medicines our children need.

Through this journey, I have connected with many amazing families as we have shared in triumph and hardship. We have bonded over our desire to ease the suffering and pain of families like ours worldwide. All these individuals, families and even health care providers share the commonalities of struggling with the care of other diseases, too, not just hemophilia.

Families like mine run into too many problems to name with insurance companies and others in the drug supply chain. From skyrocketing premiums to denial of coverage and lackluster in-network providers to waiting weeks for a proper referral, we have seen and endured it all.

To lower patients’ out-of-pocket costs, our federal legislators, here in Delaware and across the country, must consider the many ways insurance companies and little-known corporations called pharmacy benefit managers (PBMs) drive up our costs. Many patients and families have never heard of these, but I have seen firsthand how they manage to inflate the cost of care to boost their own profits. What I have witnessed tells me we’re not going to make medicines more affordable until we deal with the supply chain companies setting the high costs.

Unfortunately, these shady middlemen aren’t often mentioned in public debate about prescription drug costs, until recently. The reality is that they play a major role in driving up costs, as they decide which drugs are covered by insurance and how insurance companies split the pharmacy bill with patients, like you and I. Pharmacy benefit managers negotiate discounts with drugmakers, but they don’t use those concessions to reduce out-of-pocket costs: Between 2017-19, more than $8 billion of PBM profits were derived from negotiated discounts.

We have learned, for example, that the share of spending on insulin collected by pharmacy benefit managers increased by more than 150% between 2014-18, according to a study by researchers at the University of Southern California. Even though they don’t produce the medicine or provide any value to patients, the PBMs are enhancing their own bottom line and preventing critical medicines from being more affordable.

Last year, Congress enacted a cap on insulin copays for Medicare beneficiaries, the biggest drug-pricing reform in years. This benefit will only be felt by a fraction of chronic-disease patients, too many of whom continue to struggle with the cost of prescription drugs. If we truly want to change the way we pay for prescription drugs in this country, we must start by reining in the middlemen who keep costs artificially high. I stand firmly with any legislator who seeks to ease the financial burden of families who continue to struggle with the cost of prescription drugs, regardless of party affiliation. I strongly encourage you to do the same.

Gail Novak

Middletown