Florida Politics, January 16, 2020
Four years after I was diagnosed with heart failure in 2013, I had a heart attack. My heart was failing, and my only option was a heart transplant. I was fortunate when a donor heart became available, and I have lived with my new heart since July 2018.
Having a healthy organ is a true gift, and I view it as such. I am diligent about doing whatever I need to in order to take care of this gift that saved my life, including spending the rest of my life taking transplant medications so my body doesn’t reject this gift.
I am certainly grateful that this medication exists, but I’m not happy about what I have to do in order to receive it.
This could be so much easier, if not for the intervention of middlemen known as pharmacy benefits managers, or PBMs. They have turned a simple process into a nightmare for me and for countless other Floridians.
Fortunately, the Florida Legislature has a chance to fix this terrible system, and I hope they do so quickly.
Here is how the broken PBM system affected me: I must take two of the most common medications for transplant patients, mycophenolate and tacrolimus. For my insurance, I was told that I must use generics (which is OK with my doctor) – and the PBM has dictated that the medications MUST come from a particular pharmacy, not my own regular pharmacy.
And guess what? That pharmacy is owned by the PBM, so they can charge my insurance company whatever they want. My meds wouldn’t be covered if I got them from any other pharmacy, so I really have no choice because I must stay on these medications.
My experience with the PBM’s pharmacy has been nothing short of awful.
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