When Reality Sinks In and Step Therapy Dictates Your Treatment

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When Reality Sinks In and Step Therapy Dictates Your Treatment

Jana Rosenberger explains how she won the battle for her health after her insurance company denied her a life-saving treatment

By Jana Rosenberger

I was diagnosed with Crohn’s disease in 2015. Right away my doctor wanted me to be on an aggressive treatment due to the severity of my disease. In fact, we actually went down a list of treatment options and we skipped right over 3 whole types of treatment because we knew they wouldn’t even help me. I was too severe. We decided a biologic infusion treatment was the best option. I was just excited that some relief would finally be heading my way.

That’s when I learned for the first time that insurance has to actually approve your treatment first. I didn’t understand that concept. I remember looking at my doctor and saying, “Well, I don’t care if they don’t cover it. I need that treatment!” Well, the first denial letter came in the mail pretty quickly (August 2015). You can imagine all kinds of emotions were raging through me. When I looked up the price of the treatment and it was in the $25,000 range per infusion—reality sank in. Not exactly affordable! I realized I was going to have to fight for this treatment. And I was ready to do it because I wanted to get better!

My doctor and his team of nurses were just as frustrated as me and fought right alongside me! Denial after denial letter came in the mail! My doctor personally did a peer to peer review with my insurance company multiple times, and they just refused to budge. The insurance company insisted that we should try cheaper treatment options first before trying something more expensive. That is called step therapy. Even though my doctor knew those cheaper, less aggressive treatments wouldn’t help me at all. It felt as though the insurance company was effectively trying to act as my doctor and dictate my treatment, even though they had never once seen me. Doesn’t make any sense! The insurance company cannot and should not dictate treatment, that is something decided between the patient and the doctor. Your doctor treats you, not your insurance company. It’s as simple as that.

The insurance battle went on for months. So we put in an official appeal—twice! While all this was going on, my disease progressed and got worse. My Crohn’s Disease started to manifest itself in other ways (extraintestinal manifestations). I started experiencing joint pain and severe fatigue. I started getting huge skin rashes called erythema nodosum. It also became much harder for me to work, so I was taking a lot of sick days. To suppress all these new symptoms popping up, I was forced to go on a regimen of steroids for about 3 or 4 months. I got almost every single side effect in the book from the steroids! It was a horrible experience! I woke up each and every single day with some new complication.

Every time I would call the insurance company to check in on the appeal process, they would give me the run around and tell me they didn’t really have any answers. So, I called and bugged them until they did give me answers! I informed them how my disease was progressing while they were putting my treatment on hold. I explained that by forcing me onto a different treatment, they were actually costing us both more money in the long run! And causing my health to worsen! I inquired about who made the decisions in my appeal process and asked if there were any Gastroenterology specialists on that board since my disease is so specific. I had every right to know who was making decisions on MY healthcare! I got the HR department at work to give the insurance company a call as well. (Since the insurance policy was through their company, it was worth them checking on things too!) I kept documents and records of everything. I was constantly calling and checking in with my doctor’s office to see if there was anything else I could do! I poured all the energy I had left in my body into fighting the good fight for my healthcare!

When I finally got the call that we had received approval (October 20, 2015), I cried with joy! I have never in my life fought for something harder! My health had very legitimately been hanging in the balance for months! I hopped right on that biologic treatment as soon as possible (November 12, 2015). And guess what? It worked! The infusions got me to a more manageable level with my Crohn’s disease. I’m much less severe now then I was when I was first diagnosed. I couldn’t be more thankful for my doctor and his team for helping me get the treatment I needed!

I hate to look back and think all this could have been avoided. But it is true! If my insurance company had just approved proper treatment right off the bat, my disease likely would not have progressed in severity. I also feel the stress of fighting for my health, probably contributed to my health worsening. I don’t wish that experience on anyone! This is exactly why step therapy is a bad policy. It risks the health of the patient! In some cases it’s just plain unsafe and causes the patient more suffering! Why should anyone have to endure those things? You shouldn’t need to fight for your own treatment. It should be a basic human right to receive the care you need!

Jana lives in Pennsylvania and has Highmark Blue Shield. Read more about her journey living with Chron’s disease, a chronic inflammatory bowel disease (IBD) here.

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