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!

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.