July 9, 2019 Blogs

A cure for this disease would change the lives of so many.

My name is Amy Mason-Cooley. I am from Alabama, and I have lived with sickle cell disease nearly all of my life. 

I was first diagnosed with sickle cell disease (SCD) when I was 5 years old. My kindergarten teacher, Mrs. Simmons, suggested my mom get me another doctor after noticing my extreme bouts of pain. She wasn’t sure what was wrong –– she just knew something was wrong. It was then that I was tested for sickle cell and rheumatoid arthritis. There were times when my teacher would hold me, and just rock me while still trying to teach class, doing anything she could to provide me comfort. That woman is the reason why I am who I am today. I truly believed Mrs. Simmons saved my life. Had she not intervened with my care, I would’ve died a long time ago. 

As an adult, SCD had impacted my life in many ways. Living with and maintaining SCD has made it hard to steadily maintain a job. Between managing pain crises and dealing with various health issues, it took me six years to graduate with my associate’s degree.  After one particularly bad pain crisis, I was left paralyzed. I had absolutely no feeling in my legs. I was in the hospital for 42 days and the mental and physical toll was immense. The effects of my hospitalization continued into my home life. I became so anxious about the thought of being left alone. When I was in the hospital, I could press a button and someone would come. When I was discharged to go home, I couldn’t handle the adjustment of living alone. Staying in the hospital for over a month affected me so much that I moved back into my mom’s house for about two weeks so I could make the adjustments I needed. 

Despite all of this, I cannot imagine my life any other way. Having lived with sickle cell the majority of my life, I have learned to cope and I use my experiences to help others. My goal is to continue to be an advocate for young children navigating sickle cell, the same way my kindergarten teacher was an advocate for me.

The effects of sickle cell can be absolutely devastating. You can’t imagine the number of parents that call me crying because their child is in crisis and they don’t know what to do. Those calls haunt me, but I’m trying to be the support my mother needed when I was growing up. I’m trying to be that “cheat sheet” that will help them get their child through yet another episode. You can’t even fathom the number of nights I’ve cried myself to sleep knowing that I couldn’t save them. People are dying. We need help –– adequate help –– so that they can live to see another day. To lead productive lives. To know what it is to go even 24 hours pain free. 

As an active member of our community, I have marched and rallied in the nation’s capital and I run a facebook support group with over 5,000 members. However, despite all of that, I haven’t seen much change in how patients are treated. I have had friends die because they look “normal.” That is why a cure for sickle cell is imperative. A cure for this disease would change the lives of so many people across the country. However, the cure will not help those who cannot afford it. Similar therapies are priced at around $1 million, and that just won’t do. We need laws in place that will allow all patients, regardless of background, to have access to life-saving medication. We must prioritize public health. Too many lives depend on it.


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