Beware the Pharmacy Benefits Manager
It’s been a long haul. Last year around this time I realized my current medication wasn’t working as well, that it’s effects were fading. So in December, I made the switch to a new drug. It worked briefly in the new year for a few weeks, then stopped.
Maybe it was dumb, but I gave the new drug more time.
I thought: maybe I’m having a flare. Maybe I’m just in a bad patch. Maybe it will wake up and work again. Maybe. Maybe. Maybe. I didn’t want to act too hastily. After seven months I finally gave up and my doctor prescribed a new drug.
But I had no idea the fight I was about to endure. When I got my first rejection to start treatment I honestly thought it was a mistake. I looked up my coverage. Yes, I have excellent insurance and the biologic drug was covered in both injection and infusion formats. When I called, the confusion was swept away by anger.
A new sheriff in town
There was a new sheriff in town: the pharmacy benefits manager. My insurance (like many) contracts out the pharmacy plan and the company’s overseer is the pharmacy benefits manager. Their job is to make the pharmacy maximum money by negotiating drug prices with pharmaceutical companies and making patients take cheaper drugs to save them money. Their job description is literally: maximize profit.
It was explained that the drug my doctor prescribed was not on the “preferred” drug list. This is a top-secret list (yes, it is secret and very difficult or next to impossible to get a current, accurate list) that prioritizes the cheaper drugs. The rule is that you must either try and fail the cheaper drugs or present scientific evidence that the prescribed drug must be used instead. Theoretically, once this case is made you can then take the drug the doctor actually prescribed.
For three months we fought valiantly.
We outlined that I had already failed two of the four preferred drugs. Even this took a while for them to understand and accept.
We also outlined the scientific evidence why the drug my doctor prescribed was for me better than the two other preferred drugs:
- The prescribed drug outperformed one preferred drug for people with my condition of juvenile idiopathic arthritis (JIA).
- The prescribed drug was proven safe and effective for patients with JIA and was approved for treatment of this specific condition.
- The other preferred drug was not yet approved for JIA.
It did not matter. The reason could not win this fight.
The pharmacy benefits manager had a “rheumatologist” (I use quotes because I have no idea of his real credentials and never met him) speak with my doctor and review recent records. He decided that I didn’t have JIA, that I am an adult so have rheumatoid arthritis even though I’ve had the disease and subsequent damage from age two. He decided that I should take the unapproved drug.
In my geographic area I have other appeal options so I engaged my state health care ombudsman in the fight. They agreed with me, but could not get the pharmacy to overturn their decision. I could appeal to an outside board, but winning was uncertain and the fight had been going on for three months. I have been living with lots of pain, stiffness, and fatigue. I was losing my health along with my mind. I gave in.
There are so many problems with this approach to health care. First of all, when did decisions about my health get made by other people that are not me and my doctor? I thought I had top billing since it is my body and I pay for the health insurance. Why do these pharmacy benefits managers get to have all of the power and I get to have none about my health care and treatment? How is this process fair or ethical? Since when is health care about the money instead of best practice based on scientific evidence? This may sound naïve – yes, money has always been part of the equation, but the pendulum now seems totally out of whack. Even people at the insurance company were often dumbfounded at the way they operated.
I write this article as a warning. Beware the pharmacy benefits manager. Be ever on guard. They are not out to help you, the patient. It is all about the money. And your treatment may be affected by their unethical and non-scientific preferences.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?