Person waving arm trying to get the attention of 4 insurance workers with backs turned

Insurance Issues: The Importance of Self-Advocacy

I learned this past month that it’s never possible to become complacent when dealing with insurance companies and that self-advocacy is important. Since I am taking an oral targeted therapy medication, I am reliant upon a specialty pharmacy to get me my prescription each month. Although I’ve written about specialty pharmacies and how they work in a previous article, I still wasn’t prepared for my recent situation.

Waiting for my prescription to renew

My husband changed jobs over a year ago, with an accompanying change in insurance company. While that required me to jump through hoops with my specialty pharmacy as I wrote about previously, everything has been running smoothly ever since. I put in a request to renew my prescription last month as always and had a date scheduled to have my medication delivered to my house. Two days before my prescription was to arrive, however, I received a voicemail message from my specialty pharmacy that I needed to call them as soon as possible.

Speaking with a "Conflict Resolution Specialist"

Upon returning the call, I was told that my insurance company had just informed my specialty pharmacy that they were no longer allowed to fill my prescription. They suggested that I contact my insurance company for details. After spending a lot of time on hold, talking to both a representative and a supervisor who couldn’t help me, I finally reached a “Conflict Resolution Specialist” who told me that when I switched insurance companies over a year ago, I was required to start using a specific specialty pharmacy company owned by my insurance company. I was never told about this requirement (it evidently was buried somewhere in plan documentation) and it was unclear why it took over a year for it to become an issue.

After much discussion, my Conflict Resolution Specialist acknowledged that it would take at least a week to get my prescription filled by the company-owned pharmacy since I was a “new” customer and agreed to do a one-month override so that I could get my pills from my former specialty pharmacy in time. Next month, she told me that I would need to start using the new specialty pharmacy (specialty pharmacy #2) and she would make sure all my information was transferred over so everything would run smoothly. I got off the phone frustrated that I had spent so much time dealing with this issue, but happy that I wouldn’t have a problem with running out of medicine after all.

Following up with my insurance company

Once I received my refill a couple of days later, I called my insurance company back to make sure everything indeed was set with the new specialty pharmacy for the following month. That’s when I found out that even if you have a Conflict Resolution Specialist and know her name and ID number, it is impossible to request to speak to the same person again.

Instead, I got a new Conflict Resolution Specialist who told me that the company-owned specialty pharmacy didn’t carry my medication, so my prescription was transferred to a different pharmacy (specialty pharmacy #3) that they work with a lot. I asked if I could just go back to my original pharmacy and was told no. Conflict Resolution Specialist #2 assured me that specialty pharmacy #3 would be able to fill my prescription without any problems and I should call in about a week just to make sure everything was set up in their system.

Left without insurance answers...again

Upon calling specialty pharmacy #3 a week later, I was told my prescription was transferred to specialty pharmacy #4! I couldn’t get any explanation why! I called my insurance company yet again, spoke to Conflict Resolution Specialist #3 and “convinced” her to move my prescription back to my original specialty pharmacy. I may have made some heated comments about how badly they were treating a stage IV lung cancer patient and how I was going to start a Twitter campaign if this wasn’t resolved.

Conflict Resolution Specialist #3 promised to investigate the reasons behind the previous switch and call me back. I never heard from her again and of course, cannot reach her directly so I guess I will never know.

We need to advocate for ourselves

This was truly an absolutely ridiculous experience. After spending about six hours total on the phone (I tracked it), I ended up right back where I started. Why am I sharing this? Well, I needed to vent and I also wanted to underscore the absolute necessity of advocating for yourself. Neither the representations from my insurance company or any of the specialty pharmacies I spoke with cared even the tiniest bit that I needed this medication to continue to live my life!

If you cannot advocate for yourself, please consider designating a family member or friend who can help you with any insurance decisions that are not made in your best interest. It is critically important!

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

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