Are Insurers Slighting Sjögren’s Patients?

By Susan Barajas

When you have a disease nobody has heard of, it’s easy to feel alone. And when insurance companies make it harder for you to access treatment, it can become even more disheartening. I know these feelings all too well. 

Six years ago, I was diagnosed with Sjögren’s. It’s an autoimmune disease that attacks the moisture glands in the body. For me, that translates to dry eyes, dry mouth, and joint and muscle pain. I also experience light sensitivity and extreme fatigue. 

I used to have unlimited energy. Now I need frequent rest breaks. I don’t leave the house without my “go bag” of Chapstick, throat lozenges, eye drops and a water bottle. And I take about 20 pills every day, because there isn’t a single treatment for Sjögren’s. 

That alone is tedious. Yet, every year, my insurance company requires a new prior authorization for some of my medications. It’s a curious process for a disease that will never go away.

One year, my insurer didn’t want to approve a medication I had been taking – one that was working fine. They wanted to switch me to something cheaper for the insurance company. I couldn’t understand why they had more influence over my prescriptions than my doctor did.

Even after patients overcome insurance barriers like these, we still have to worry about out-of-pocket costs. My prescription eye drops, for example, cost me $30 a month, thanks to the manufacturer’s co-pay card. I sympathize with Sjögren’s patients who have only Medicare coverage and are prohibited from using co-pay cards. I know they often pay up to $600 a month for the same eye drops, more than many can afford. 

The discount the co-pay card provides is also important because the co-pays and co-insurance for my medications come on top of the costs for non-prescription supports such as additional eye drops and dry mouth lozenges. I also use moisture chamber glasses when I go outside. These special glasses help my eyes retain moisture and keep wind and dust from getting into my eyes. This is one more expense that is often not reimbursed by insurance. All of these costs add up very quickly.

With April being Sjögren’s Awareness Month, I can think of no better time to raise awareness about the insurance battles that patients like me face. Just as our eyes are our window to the world, insurance coverage is our bridge to proper vision treatment. With fewer barriers and more manageable out-of-pocket expenses, people like me living with Sjögren’s can better protect our eyes and better enjoy the beautiful world around us. 

Susan Barajas is a patient, advocate and board member of the Sjögren’s Foundation. 


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