“The Actemra has been denied. We will start the appeals process.” These two sentences glare at me from the patient portal message center.  I feel exposed and vulnerable. Here we go again. My doctor says I need this medication, but my insurance is saying “NO.”

I was “officially” diagnosed with sarcoidosis in January 2013. For the past six years, my doctors have tried to treat my numerous symptoms while trying to slow the progression of the disease. No matter what we’ve tried, the disease slowly marches on.

At a recent appointment, my doctors told me we need to try something different, something “outside the box.” Just seven months ago, I was going through the exact same process. Treatment isn’t working. Doctors want to try something different  Insurance denies coverage. But, after a long battle, they finally give in. Finally, I try the treatment, it fails, and the disease keeps progressing. Repeat. Repeat. Repeat. It is a miserable version of groundhog’s day.    

While I wait, I wonder, “What additional damage is being done? Will this new treatment be the answer? Is it even worth fighting for if I don’t know it’s going to work? Is it time to just give up?” I take several deep breaths. From my heart, I know the answer. YES, it is worth fighting for the next treatment. YES, it is worth trying even without any guarantees. NO, I should never give up.

As a rare disease patient, these “outside the box” treatments are all I have. There is no playbook, no stack of research to guide us.  We used up all the “usual” treatments years ago. They didn’t stop the disease. When I read the insurance denial, it states: “The use of Actemra has been determined to be not medically necessary because the use of Actemra for multisystem sarcoidosis is considered Experimental/Investigational.” I whole heartedly wish there were treatments for me that weren’t experimental or investigational.  To get treatments you need research, and to get research you need funding.  Few want to invest in a rare disease treatment. 

So here I am. Trying to find treatments that will work, but being denied the chance to try them. This frontier of denial is my new normal.  They can deny me, but my doctors and I will fight.

So how do I cope with the continual insurance battles? I have a few practices that help me stay positive and I’d love to share them in the hope that they can help you too:

 

Watch out for the Saboteur

It’s easy to slip to the dark side during this process. That little voice comes out and says, “Why bother? It’s not going to work anyway. They’ll never approve it.” Then I remember, don’t sabotage your efforts before they even begin. I listen to that voice and I realize it’s scared and it’s afraid. For me, it’s important to acknowledge those feelings and give them an outlet. Journaling is a great way to get those thoughts out of my head and down on paper. There I can observe them, instead of being subject to them.  I have power over them, instead of them having power over me.

 

Loving Kindness

Sometimes I call it “Treat Yourself!”  Other times, I call it “Self-Compassion.” Whatever I call it, it’s the recognition that I’m going through a lot and I need a little pick me up.  Flowers from the grocery store, an extra hour in bed when it’s not really needed, or just cutting myself some slack. I try to treat myself gently, because the process is tough enough, I don’t need to add on.

 

Ask for help

There have been times, especially recently, when I feel the weight of the sadness.  It helps to know that I’m not alone.  I talk about what I’m feeling with my husband, family, and friends. When that isn’t enough, I reach out to my psychiatrist. I recently went back on an anti-depressant. I need a leg-up to boost me through this low time. I’ve been on and off them throughout this rare disease journey.  They are a temporary life raft during a turbulent time. I need to have positive energy and thinking to tackle the insurance battles. Living with a rare disease is exhausting. Having to fight your insurance for needed treatments takes it to a new level.  As I prepare for this latest battle, I remind myself this is a marathon, not a sprint. I will not settle. I will not give up. I will keep pushing for treatments to stop this disease. Hope isn’t an emotion; it’s a way of thinking. For all of you battling your insurance for life saving treatments, keep hope alive. Stay strong, stay positive and keep fighting.

Heidi Junk is an FSR Patient Ambassador. She worked in the news industry for over twenty years, most recently in the Washington, D.C. area as bureau chief for a prominent news group. Heidi was officially diagnosed with sarcoidosis in January 2013 with a lung biopsy. The disease has impacted her lungs, liver, lymph nodes, spleen, joints and nerves. Heidi left her position as bureau chief in June 2015 to focus on self care. She hopes to pursue a new career as an executive leadership coach. Heidi enjoys exercising, fly-fishing, and cooking. She recently took an eight week course on Mindfulness Based Stress Reduction which included a day long retreat filled with meditation and silence.