Meet Emily, the patient

My symptoms started in my jaw over 10 years ago and was very painful.  At first, I went to several specialists to find out exactly what was going on in my jaw and I finally was referred to a rheumatologist who diagnosed me with Ankylosing Spondylitis (AS for short).  I started feeling back pain when I was sitting for long periods of time, and I had to sit… I had to answer emails, be on the phone… I had a desk job. Those things were affecting my performance. The pain was just getting unbearable…  I finally had to quit my job.  Today, while I am doing a lot better on my treatment, I still experience pain at times, down my shoulder blades, my neck is sometimes stiff in the morning along with my lower back, hips and thighs.

Being a mom is harder with my symptoms. I try to enjoy life with them as much as I can.  Going to the park is sometimes really hard and I try my best until my body tells me to slow down.  As long as my kids are happy, I am happy. I try to always tell them that Mommy is going to be okay, and I don’t want them to feel like they have to always take care of me.

Recently, I received a call from the staff at my rheumatology practice, who told me they were trying to get my standard treatment authorized but were being required to switch my medication without my consent. They said I might need to get involved directly, but that my rheumatologist was appealing the decision and asking for a medical review. I asked, “what does this mean? Why can’t I get my usual treatment?” I was so scared because I knew my AS would get worse without my medicine.

The Pharmacy Benefit Manager had informed my doctor that the medication I had been on for 10 years would no longer be authorized and that I was required to “switch” my medications.  My doctor demanded a direct phone call with the PBM’s medical director to try and appeal this harmful decision.  When my doctor finally got a follow up phone call scheduled, 6 weeks later, he told the PBM there was no way he was changing my medication, as I would not do well on a different course of treatment.

After a heated exchange, the PBM finally relented and allowed me to stay on the therapy that my doctor and I were managing together. I cannot thank the staff and my doctor for caring enough to fight for me but am very concerned that this will happen again over and over.

Please don’t interrupt my care!