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Daughter has Type-1 diabetes

When I was 16, I experienced a trauma that left me with severe fibromyalgia and PTSD. At 19 years old, I was officially diagnosed and began taking prescription medication to manage my symptoms. One of the medications I take, Vyvanse, has made an incredible difference in my quality of life. Unfortunately, this relief comes with a steep price tag of over $1,000 a month. For the two years I’ve taken this medication, we’ve been able to afford it because of my husband’s insurance. But I’ve always lived in fear of what would happen if we were to lose coverage and have to pay the full cost of the drug.

This summer — in the middle of a terrifying pandemic — this fear became a reality. Due to a recent change in my husband’s employment, my family has been left without insurance for the last two months. We can’t afford any of the coverage options available to us, so we’ve been forced to pay for my prescriptions out of pocket until my husband’s new job begins.

Because of Vyvanse’s steep price, I made the difficult decision to stop taking the drug completely. There’s no generic alternative, so I’ve had to take a medication that doesn’t work as well. Instead of focusing on my health, I’ve had to worry about how I’ll cover the cost of my next prescription. And as an active member of the chronic illness community, I know my story is not unique.

Caring for patients was my life’s work as a registered nurse. While I’d seen my patients struggle with drug prices, I began to see the issue firsthand in my own life when I was diagnosed with multiple sclerosis in 2003. When I was first prescribed Copaxone for my MS, it cost me $1,800 a month and wiped out my savings. I received grants every year for my medications from 2012 to 2016. Without the grants, I would be in the Medicare donut hole after just one month. When I was unable to get a grant in 2017, the same medication cost $6,000 a month and forced me to go off of it entirely for three months. I also went off my pancreas enzymes for 6 months, all because the cost was too high.

While off my medication, I began having difficulty with my cognitive function. I felt so frustrated as I developed these cognitive difficulties. I work really hard to keep my life in order and my memory intact even with MS. It was devastating. The prohibitive price of my prescription is the reason for these problems. If my Copaxone were affordable, it wouldn’t have been easy, but I would’ve been able to keep fighting to keep my life in order and protect my memory. The high price of my medication took that power away from me. I was left dejected, unable to get the care I needed, and powerless against my condition. Because of the drug companies’ greed, I lost something so valuable –– and I’m not the only one.