Low predictability and high costs.

My name is Debbie Greer. I was a nurse for twenty-five years before my life was turned upside down in 2008. After suffering from numbness in my feet and having an occasional loss of balance, I was diagnosed multiple sclerosis (MS). MS is an autoimmune disease that varies in form and severity. For years, my MS was relapsing-remitting, meaning I would have a sudden relapse after months of remission. The relapse would leave me worse off, usually with more of a limp or less function in my left hand. Eventually, my MS became secondary progressive, which means that instead of sudden relapses, the loss of function in the left side of my body happens slowly overtime.

Treatment options for MS are notorious for two things: low predictability and high costs. Since my diagnosis, I have tried six different medications. Most recently, I tried one of the more promising options—Ocrevus—a new infusion treatment that is administered twice a year. The jury is still out as to whether this drug will slow my disease’s progression because I just started Ocrevus last year when it first became available. What is certain about this drug, though, is the outrageous expense. One vial of Ocrevus, which is small enough to hold in your hand, comes with a price tag of $96,000.

I am not yet on Medicare, but that inevitability is soon approaching as my husband reaches retirement age. I worry about how Ocrevus and any other drugs I am prescribed will be covered by Medicare. It is crazy to me that Medicare does not negotiate with drug companies. It’s not fair that we pay 80% more than other wealthy countries. Because of my experience with infusion drugs, I am supportive of The Department of Health and Human Services plan to lower Medicare Part B drug prices. The plan will lower out of pocket costs for Medicare Part B patients like me in a few years. That would make a big difference for me and my family as we face my husband’s retirement and my continually progressing disease.