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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (12)
  • sarra1833
    4 months ago

    Omg that’s complete horse crap. I feel your anger and annoyance and confusion. They have no right to dictate over ones doctor. NOT cool at all.

  • Kelly Mack moderator author
    4 months ago

    Thanks sarra1833! I couldn’t agree more! Appreciate your support. Best, Kelly (RheumatoidArthritis.net Team)

  • lindajumper
    5 months ago

    Kelly, I’ve been through this scenario first with trying to get Xeljanz and now an injectable non-statin…statin. Isn’t it reprehensible that we’re fighting a miserable disease process that is worsened by stress and yet, here we are! Combine that with my sometimes unruly temperament and look out insurance, pharmacy “managers” and anyone who gets in my way. The hrs we spend on this nonsense provoke more frustration and….pain. Great article, hits home!

  • Kelly Mack moderator author
    4 months ago

    These scenarios are definitely reprehensible! To have challenging illnesses and then the stress of fighting for the available and effective treatments we need just because they cost money. Fighting for our health shouldn’t be so costly and exhausting. Hang in there! Best, Kelly (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    5 months ago

    My friendly Pharmacy Benefit Manager (PBM) is the one thing in my life that gives the most grief. I believe they raise prices to us, cause us to use medicines instead of what our doctors want us to use and maybe worst of all, hide behind a label that is not really understand.

  • Kelly Mack moderator author
    4 months ago

    Totally agree with your comment, Rick. I think they are scammers and definitely hide behind a shroud of confusion. Perhaps it’s silly, but I’m hoping patient voices will eventually be heard and PBMs put out on the street (or at least out of business). Best, Kelly (RheumatoidArthritis.net Team)

  • pasparry1
    5 months ago

    Kelly – thank you for this article: so well timed too! I am going through a similar situation- my husband changed jobs, thus a new medical insurance company. They refuse to give me Xeljanz which has worked extremely well over the last year. I have given them, as has my Rheumatologist, the information I have “failed” four biologics and have been on Methotrexate non-stop for 12 years as well. They still refuse but I am not done yet! Soul destroying to say the least of it. It is criminal that they can hold us to ransom in this way.

  • Kelly Mack moderator author
    4 months ago

    Pasparry1, I am so deeply sorry to hear about your fight for medication that works. Keep on fighting! I know its hard, but you deserve treatment that works! I agree that it is criminal and I truly don’t understand how these practices are legal. Maybe patient advocacy will eventually bring some sense to PBMs. Rooting for you. Best, Kelly (RheumatoidArthritis.net Team)

  • LifenowwithRD
    5 months ago

    Oh my, I could have written this article myself! I’ve been in this fight for the better part of the year. I just want to scream!! Why in this country does a Dr whom we’ve never met, whose never examined me, and knows nothing about me except what he reads from my chart get to decide what drug I should take?? TNF inhibitors do not work for me, neither do a very long list of other drugs. So it seems like they would approve something else so they won’t have to pay for our joint replacements down the road. Here’s the kicker also. They are paying about $2,000 more a month for an infusion when they could juse approve the other med and save the $$. Our system in the US is very broken and I sure hope it gets fixed some day before I’m so twisted up that I’m beyond repair.

  • Kelly Mack moderator author
    4 months ago

    Hi LifenowwithRD, I am so sorry that you have had similar struggles! It is so frustrating and I feel like everything you wrote is right on points. They keep punting the problems in hope that someone else will pay for the expensive surgeries down the line. But if we get quality care now then it stops a ton of serious and expensive problems later. Arg! All I can say is hang in there and keep fighting as I don’t know of any cure for this stupidity yet. Best, Kelly (RheumatoidArthritis.net Team)

  • Dalia
    5 months ago

    Oh my gosh! How horrible for you. I would try getting the Better Business Bureau involved. Based on the info you stated there seems to be no other reason than money as to why you can’t get that medication. I’m mad enough on your behalf that I’d even threaten them with legal action. They are affecting your quality of life. You can explain to the insurance company that they will pay out even more on medications for pain and surgeries to deal with the damage that RA does. I hope they remove their heads from their butts and reverse their decision! Good luck and gentle hugs.

  • Kelly Mack moderator author
    5 months ago

    Thanks so much, Dalia! Appreciate your support. I did several appeals, but did not win the war. This is an issue I feel very passionate about, so I am not done. But patients definitely need to know as I think this will be a growing problem. Hopefully our voices and stories can change this terrible trend. Best, Kelly (RheumatoidArthritis.net Team)

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