Voices Across America

PBM Switching My Drugs Without My Doctor’s Permission


State: North Carolina
Congressional District: NC04


Blood Disease, Heart Disease, Lung Disease, Rare Disease

Issues and Challenges

Beth has encountered: Access to Medicine, Insurance Issues, Non-Medical Switching, Prior Authorization, Step-Therapy / Fail First

My Story

Eighteen years ago, I developed deep vein thrombosis (DVT) and pulmonary embolism (PE)—blood clots in my legs and lungs. It was discovered I have a rare clotting disorder—a thrombophilia—and I am high risk for a clot recurrence. I will be on lifelong anticoagulation, or blood thinning therapy.

My father also had DVT and PE, but his clots were related to cancer treatment. Unfortunately, while he was on anticoagulation, he developed a massive internal bleed which could not be controlled, and he died because of his bleed. So, I know all too well the risks that are inherit in both my condition and its treatment.

My professional background is in health care policy. My personal clotting experience prompted me to co-found a blood clot education program at the University of North Carolina at Chapel Hill, Clot Connect. which educates patients and clinicians about blood clots and anticoagulation. So, I am a very well informed patient when it comes to understanding my treatment options.

My doctor of 18 years and I revisit my treatment options regularly to ensure I’m on the appropriate drug therapy. We talk about the latest clinical trials. We discuss changes in my medical history. We evaluate my clotting and bleeding risk. And then, I share with him my personal preferences and we decide together which medication is best for my unique need. It truly is a best practices model for evidenced-based shared-decision making.

I’ve been stable on my current blood thinning medication for 8 years. My insurance has been the same during that time, there’s never been any issue with my anticoagulant being covered, until recently.

I received a letter in the mail from my insurance pharmacy benefits manager (PBM) that the medication I had been taking for the past eight years would no longer be covered. It said I should ask my doctor about writing a new prescription for a different listed medication.

That was it. The letter provided no phone number to call if I had questions. It did not mention an appeals process.

After contacting my PBM, I learned I could ask my doctor to file an exemption request. However, my PBM’s approval criteria required I first take and fail the new medication or have other clinical indication, which was not defined. If the exemption was approved it would be at a higher copay tier, making it subject to coinsurance and deductible. In practical terms, only after a documented adverse event on the new medication could I go back to the medication I had been stable on for eight years and my costs would rise by $2,400 a year.

I was shocked to learn that a PBM could force me to switch blood thinners over the direct prescribing advice of the physician who has been managing my condition for 18 years. Anticoagulants are the #1 class of drugs for adverse events and require careful management. It is egregious that anyone other than my physician who knows me best is making decisions about which blood thinner I take. I’m high risk for clotting and I want to minimize my bleeding risk so I can avoid what happened to my dad. It truly frightens me to be switched to a medication that was not the one my doctor recommended and that I have been stable and successful on for the past eight years. Patients need protection from this type of non-medical switching.

My Motivation and Inspiration

I have been a patient advocate for nearly two decades and I believe strongly in patient education and empowerment. I want to ensure what happened to me does not happen to other patients.

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