How I Managed When Insurance Stopped Paying for My Biologics

In the middle of my treatment, my insurance company abruptly refused to cover my expensive medication. Here’s how I managed this sudden disruption and discovered the importance of self-advocacy.

Ideally, when you go to the doctor, they’ll look at your problem, make a diagnosis, and make recommendations based on research and professional expertise. But that’s all in theory, right?

Sometimes, there won’t be an answer or a cure. Sometimes, the help we need is still in the research phase, or the existing knowledge is limited. Sometimes, insurance companies — not your doctor — decide what’s right for you.

You read that correctly. It doesn’t matter that you went through all the right steps and did all the right things. Sometimes, your insurance company decides that money is more important than your health, and they get to choose what you need.

But was a representative from the insurance company there during your evaluation with your doctor? What’s the point of doctors if insurance is just going to tell me what I need? Aren’t we supposed to work together?

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Losing access to my medication

I remember getting a letter in the mail from my insurance months after I’d already started Consentyx. They weren’t going to cover it. I’d already been on the biologic medication for at least 6 months. I was furious. I was going to have to start all over.

I was doing so well, and I felt amazing. Insurance took that feeling of security all away with one letter. There was no phone call or a medical professional to discuss my needs. So much for continuity of care. Who needs that, right? Continuity my ass.

There are research studies about the benefits of routine for those struggling with chronic conditions. In my anger, I assumed those studies didn’t matter. I was frantic, to say the least.

I petitioned the insurance company. I went through all the bells and whistles: waiting in lines for customer service, being sent to supervisors, then to billing, and ultimately, the pharmacist to confirm my suspicions. My insurance just didn’t want to pay for it.

Biologics are expensive — a single dose averages between $15,000 and $20,000. Technically, because I pleaded for continuity of care, they decided to “cover it,” but only $5 worth. I was on the hook for the rest.

Feeling rushed into a medical decision

They did offer me a therapeutic alternative — a medication I’d never heard of before. I would need preapproval for it, and if I had questions, I would have to call the insurance company. There was no time for an appointment with my dermatologist (who books 6 months out).

There was no time to push further for my old medication between completing prior authorizations and setting up delivery with a new pharmacy specific to my insurance’s contracts. There was no time, or I would face a delay in care. If I waited, the therapeutic effect of my current medications would go away.

I had questions like, “Was this medication even going to work?” The one I was on had given me total clearance. I asked the pharmacy about this, but their hands were tied. “Medications are different for everyone.” 

Contracts between insurance agencies, pharmacies, and doctors were set with little room for change without Herculean efforts. Paperwork and non-medication professionals’ contracts were the reason that I couldn’t get the medication that my specialist doctor said I needed.

Pushing ahead and demanding answers

I remember considering myself fortunate because I knew the system. I knew the path of the paperwork, and I felt frustrated for the people that would have to go through this blindsided. While angry about what I had to do to feel confident in this medication change, I did the work.

I called my doctor to discuss the risks and benefits. I asked for the resources my insurance provided and touched base with their nurses on call. I asked for advice from the specialty pharmacist. Information and creating more curated questions were going to be my greatest strengths going forward. 

I say these things as a cautionary tale to those with stories like mine. Ultimately, I did have to change my medication. My options were to take the medication the insurance offered or go without because I couldn’t afford the alternative.

Learning the importance of self-advocacy

I was fortunate that the medication worked for me in the same capacity as the last. The phrase, “You’re your own best advocate,” will always ring true for me. I felt like I didn’t have an option in the change, but I certainly deserved answers as to why.

I demanded “receipts.” If I had concerns, I had to assess them quickly and be prepared for hours of waiting on the phone for the right person and the answers.

Takeaway

I implore you to find the answers. Don’t be afraid to call your doctor, pharmacist, and insurance company to guide you through the changes. Demand answers. It’s what they’re there for. It’s what they’re literally paid to do.

Be the chef in your own kitchen when there are clearly too many cooks in the way.