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.
I know all too well the risks that are inherit in both my condition and its treatment. My father also had DVT and PE. He passed away while he was on anticoagulation and developed a severe internal bleed.
My doctor of 18 years and I regularly revisit my treatment options 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.
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. 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.
Around Thanksgiving, I opened a letter informing me that my PBM had been working with my insurance plan to ensure “the medications covered by your pharmacy benefit are used safely and appropriately” and that the medication I had been taking for the past eight years would no longer be covered. It said before January 1, I should ask my provider 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.
With my background in health care policy, 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.
After an outpouring of opposition by patients, physicians, and nonprofits over the course of six months, my PBM reversed the exclusion of my anticoagulant from its national formulary. I am relieved to again have covered access to the medication my doctor originally prescribed. However, it concerns me that there are no policies in place to prevent this from happening again in the future. Patients need protection from this type of non-medical switching.
Have you received this letter? Have you had any negative outcomes because of switching? Do you have a bad medical story to tell?
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