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.
My regular pharmacy is great – they easily change dosages whenever my doctor orders, call to remind me before my refills are due, and provide friendly, personal service every time. Everyone knows me, and if for some reason they don’t have something they go out of their way to make sure I have what I need. I have full confidence in them.
The PBM-owned pharmacy is almost impossible to deal with, they cause unnecessary delays, and they rarely return calls. They act like they know I have no choice but to use them, no matter how bad their service is.
Shouldn’t patients have the ability to choose a pharmacy for themselves rather than having a profit-driven PBM make that decision for us?
I’d much prefer to choose my own pharmacy for the medications I have to take for the rest of my life, but the PBM says I can’t do this.
That’s why I support two bills before the Legislature – HB 961 by Rep. Jackie Toledo and SB 1444 by Sen. Gayle Harrell – which will let patients have the freedom to choose the pharmacist that works best for them and requires PBMs to allow pharmacies to be able to participate in insurance networks, rather than creating arbitrary obstacles designed to limit access and increase profits for PBMs.
I’m a young transplant patient, and as a crime scene technician I’m able to figure things out pretty well – but this convoluted system is almost too overwhelming to understand.
I can’t imagine how many others, including the elderly, find their way through the process. I worry that some patients may give up with this system and skip their essential medications because the system is too difficult. That could quite literally put people’s lives at risk.
So much of our health care system is controlled by people only out to make a profit, not to truly help patients like me with crucial needs. PBMs are one of the worst of these, and it’s time Florida did better for its residents.
There needs to be greater accountability for these middlemen and this PBM reform legislation is a step in the right direction.
Brittany Jackson is a heart transplant patient who lives in Tampa.