January 28, 2019 Blogs

I won’t be silent any longer.

I am a 57 year-old woman living with multiple sclerosis, a degenerative and progressively disabling disease of the central nervous system. I have seldom written or said that out loud more than a few times. Part of it is that if I say it out loud, it makes it real and it’s so scary. But the main reason I don’t share my disease publicly is fear that potential employers would not consider me because of how expensive I would be.

This is not an unwarranted concern.

Two Alabamians say they lost their jobs with big companies –– not for a failure to perform, but because of the cost of treating multiple sclerosis. More than a million Americans have MS. It hits people in their working prime and costs an estimated $90,000 per year to treat.

Living with a chronic, expensive, and incurable disease, I know what it feels like to drain your bank account and see your family struggle to keep up with the cost of treatment. I am not a depressed person –– I have a depressing disease. But what is most depressing of all is Big Pharma. I am on a new drug, “a blockbuster ” for MS called Ocrevus. It is not going to cure me, only slow the disease down. My bill for my infusion came in October, and it was $100,000. This is for one treatment I need every six months. When you live with a chronic disease, you don’t just lose yourself to the illness. You lose choices because everything you do revolves around the cost of your medicine.

There are millions of Americans like me, living with MS or AIDS or diabetes or cancer. Like me, these patients live with emotional and financial hardship, every day, while Big Pharma continues to be one of the most profitable sectors of our economy. This isn’t right.

I won’t be silent any longer. I want to speak out against the drug corporations that are ruining my life and the politicians that enable them.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.