| My name is Kennedy Ross and I am a wife and mother of two teenage girls. I worked as a paralegal for 18 years until I was disabled due to my medical condition. I am also among the millions of women across the world that have lupus.
I was diagnosed with lupus in 2015 after years of misdiagnosis. Along with lupus, I also have fibromyalgia, Chronic Fatigue Syndrome, Raynaud’s Syndrome and suffer from severe migraines, just to name a few. I am currently on several medications to manage my conditions. Overall, the medications I take cost over $25,000 a month before insurance kicks in and then it reduces to about $15,000. I am prescribed an IV infusion called Benlysta, which bills at $11,000 per month. I am responsible for paying my deductible, which last year was $7,400, before insurance will to begin to pay for any bit of it. Benlysta is not covered like prescriptions you might pick up at the pharmacy. It is covered under the medical portion of my insurance plan and is administered intravenously at a doctor’s office. The bill looks more like a hospital visit than a drug receipt and instead of a small co-pay, I can be charged thousands of dollars per infusion. Levorphanol is what I have taken for lupus pain – up to 15 pills a day. Just one bottle retails at $9,750 per month. My prescription bill is enough to buy a new car every month. It is absolutely ridiculous! Up until now, I was very fortunate. I had been part of a program offered by the drug manufacturer that covered a portion of my Benlysta bill. I’ve just been approved for Medicare, which means that I am no longer eligible for the extra assistance from Benlysta’s manufacturer. I worry daily about how much I will pay for my prescriptions now that I have Medicare. What do I do if my new insurance charges me thousands a month for Benlysta and there isn’t any assistance to help me pay the bill? These drugs are just too expensive. For many people like me, the reality of affording pharmaceuticals is not guaranteed. Benlysta has completely changed my life. Without it, I cannot even get out of bed. How can I suddenly stop taking a drug that I need in order to function? Pharmaceutical costs are so high that many have to choose between paying for their medications, rent, food and other necessities. We must lower prices and co-pays in order for all of us to have access to affordable medications that we need to live healthy lives. |
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