heather

Multiple Sclerosis

When Heather, a young woman living in Michigan, injured herself in a fall while on vacation in 2000, she couldn’t have imagined it would help mask the early signs that she had multiple sclerosis (MS). Following years of health challenges, she was finally diagnosed accurately, and her doctor prescribed a course of treatment. But the next five months turned out to be even harder than diagnosing her MS. It took that long to get her insurance company to let her have the medicine her doctor prescribed. Her insurance company was forcing her to go through step therapy.  

Heather shared her story about how hard it was to work with her insurance company to get the medicine her doctor knew would help: 

Looking back, the fall on that vacation in 2000 was the first sign of my MS – but I never expected something so serious. During the next 11 years, I had some occasional falls and some problems with my hips as well as a pinched nerve when I was pregnant. I never put all the pieces together that these were all signs I was suffering from MS. 

When I was finally diagnosed – it was scary. But, I found a sense of relief knowing that what was happening to my body had a name and that my doctor had a plan for treating me.  My doctor prescribed an oral treatment, but when I tried to get the medication, my insurance company told me that I would have to go through “step therapy” and try an injectable treatment before I could receive the oral medication. 

The six weeks of trying the first injectable treatment destroyed my body. I didn’t respond well to the drug. I talked to my doctor every week and he eventually put me on a steroid, believing that my reaction to the drug was a flare-up. Those six weeks using a drug that my doctor never prescribed made my health decline tremendously. 

Because of my negative reaction to the injectable therapy, my doctor and several others told me that no other injectable treatment would work for me. My insurance company still required me to try other injectables before I could get the right medicine. I could never understand why my insurer could overrule my doctor. 

I finally got a new prescription for the oral medicine my doctor original prescribed – but I still had to jump through more hoops with my insurance company. They required blood tests, imaging scans and other evidence. Even when I followed all of the requirements, my doctor still had to call the insurer on my behalf to confirm I’d met all the conditions.  After all that – they still took weeks to approve the medication.   

I spent countless hours on the phone with people at the insurance company – I have an entire notebook filled with names and details of the calls. This was all incredibly stressful – which wasn’t helping me focus on my health at all. 

To add to the stress, I missed six months of work while this was going on. I was never sure if my job would be there when I was ready to return to work – and I missed our busy season when I normally earn a lot of overtime pay.  My husband was amazingly supportive – but he travels for work, so my mom helped out while he was away. 

Today I’m on the oral medication that my doctor originally prescribed and it’s helping – but it took five months between the time when my doctor first prescribed that medicine, and when my insurance company ultimately let me have it.  The thing that makes me most angry is that delaying the right treatment for five months permanently impacted my health and mobility.  It’s not right – my doctor knew what to do and I should have been able to work with my doctor to decide what the right course of treatment was for me.  My insurance company’s step therapy tactic harmed my health – and that is too high of a price to pay.