For Some, Step Therapy Is a Matter of Death or Life

April 20, 2021

By Dan LoDolce

I had been experiencing chest pain for a while. It was robbing me of joy – and it was often embarrassing. I’d begun to dread going to the Dodgers’ games with my friends because there were so many stairs. Once, during a work trip to San Francisco, I couldn’t keep pace with my boss and other colleagues as we walked around the hilly city. 

But the real uphill battle was yet to come. It turns out I needed medication for a life-threatening condition – medication my insurance company wouldn’t make easy to access. 

At 32, I learned my excessively high cholesterol was caused by familial hypercholesterolemia, FH for short. It’s a genetic condition that causes high LDL, or “bad,” cholesterol from birth and increases the risk of early onset coronary artery disease when left unmanaged. For me, it did both. My LDL was sky high, and my arteries were 80% clogged. 

I had a quadruple bypass, then began using cholesterol-lowering statins. They dropped my LDL to 160, but that wasn’t low enough. So my doctor prescribed an additional medication, a PCSK9 inhibitor. It was designed for people like me – people who need lower LDL than statins alone can provide.

But my insurance denied it. The company initially didn’t give a reason. I eventually learned it was because I hadn’t completed all their steps. I hadn’t taken the other medications the insurance company required me to try.

The insurer wanted me to take a different, less effective statin for three months. I had no choice if I ever wanted to use the PCSK9 inhibitor, so I started their preferred statin. For three months, my LDL – and my anxiety – rose. I couldn’t believe my health had to worsen before I got the green light to take the medication my doctor prescribed. 

My insurance eventually approved the PCSK9 inhibitor, and my LDL is now under control. But the whole process was dangerous and unnecessary. With my FH and prior heart history, even moderate LDL increases my risk of having a deadly heart attack or stroke. Health insurers have no business imposing profit-driven medication preferences when patients’ lives are on the line.

Thankfully, there is hope on the horizon. I recently learned the California legislature is considering a bill that would allow for exceptions to step therapy. I urge policymakers to pass it because patients like me, with FH, shouldn’t have to wonder if following an arbitrary insurance rule could cost them their life.

Dan LoDolce is a familial hypercholesterolemia patient and FH Foundation advocate who lives in California.

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