Kathy Hatch: Congress should act on regulating pharmacy benefit managers

This commentary is by Kathy Hatch of Colchester. She manages Epilepsy Foundation New England’s envoy program.

When I was a sophomore in college, my life took a dramatic turn. For most of my adult life I was afraid to share my story. I am sharing it now because I have no choice.

At 19, when I had my first tonic-clonic seizure (you likely have heard them called grand mal seizures), I was terrified. Gasping for breath as my muscles contracted, the seizure caused me to lose control of my bladder, wet my bed and roll into the wall hard enough to bruise my arms. I thought I was going to die. I lost consciousness.

It began happening every six weeks. After a year of going through them, I finally told my mother, who was a nurse.

Thus began my decadeslong journey of trying to manage my disease. With that, came the decadeslong journey of learning about and surviving pharmacy benefit managers who I soon realized were focused on their bottom line rather than my health. Finding the right medications was an ordeal. I was made by the pharmacy benefit managers to try several before getting the medication that my neurologist had wanted. It’s something called step therapy. Each time it happened, I’d suffer through ghastly side effects and mental anguish.

Pharmacy benefit managers were created to negotiate drug discounts from manufacturers. The idea was that they would pass along the savings to patients. But that hasn’t happened.

In fact, pharmacy benefit managers profit to the tune of billions of dollars annually, while patients are paying more for their medicines. Studies show pharmacy benefit managers have increased costs exponentially.

In a perverse universe, they often steer patients to higher priced drugs because that way they make more. They claw back savings meant for patients, and they’ve started implementing protocols that take copay assistance, meant to help patients, and pocket the money themselves.

As of 2022, the three largest pharmacy benefit managers controlled nearly 80% of the market. Because pharmacy benefit managers are the only unregulated part of the health care distribution chain, there’s no oversight of them, enabling them to get away with highway robbery. It’s egregious.

Congress has a chance to change that. The Senate Committee on Health, Education, Labor and Pensions, also known as the HELP Committee, which is chaired by Vermont’s U.S. Sen. Bernie Sanders, I-Vt., is looking at ways to reform pharmacy benefit managers.

I urge them to act. Patients deserve protection.

As for me, I tried to go on with my life, but eventually the seizures started happening every three days. I was afraid to go to parent-teacher conferences, my children’s athletic events or even a store for fear one would happen.

One day, out of desperation to have a slice of normalcy, I got in my car and drove down Interstate 89 because I just wanted to watch my two kids walk out of high school. As dangerous and reckless as this was, I just wanted to see their faces as they left school.

I never made it.

On the way there, I felt the aura that signals the start of a seizure begin. My right side began convulsing and somehow, with my left side I was able to pull the car over to the side before blanking out.

That’s when I knew that my neurologist was right. I needed brain surgery.

I’m now involved with Epilepsy New England’s envoy program, which advocates for lawmakers to bring about change for people living with epilepsy.

I, along with other envoys have met with Sanders’ team and other members of the HELP Committee to urge them to protect patients by clamping down on pharmacy benefit managers. I don’t want anyone to have to go through what I’ve been through.

I’ve been seizure-free for seven years now and count my blessings every day. But not everyone is as fortunate, and that’s why we need the HELP Committee to do its part.

The time has never been more urgent. Millions of patients in Vermont and across the country are living with medical debt that is driving them into poverty, and pharmacy benefit managers are a large cause.

Read the story on VTDigger here: Kathy Hatch: Congress should act on regulating pharmacy benefit managers .