July 10, 2019 Blogs

Another day is not a guarantee.

My name is Arelys Feliz, I’m 29 years old, and I live in Miami, FL, where I work in the health care field. I have a two-year-old boy and a baby on the way. On the outside, I look healthy and well –– a working mom who loves her family, loves to dance, and loves music.

But appearances belie my true story. 

As a child, I cried all the time. My hands and feet would swell, I had fevers and very little appetite. My mother had to spoon feed me milk. My parents knew something was wrong, but each time they took me to the doctor, they were told I had regular childhood ailments. I didn’t.

Born in the Dominican Republic, what was hurting me was rarely discussed. It wasn’t until my family took me to the hospital on a family vacation to Miami we found what was at the root of my tears and pain. 

I had sickle cell disease. 

We later moved to Miami. In school, I was exempt from gym class due to the regular pain I experienced. In 2nd grade, in the hospital already, my mother by my side, I suddenly struggled to breathe. She sprinted to the nurses station. Fluid filled my lungs and I went into a coma for two months. It’s a miracle that I’m here today. 

Just after high school I experienced my second major crisis. I had gone to the emergency room when my symptoms had flared, and I knew something was very wrong. My blood pressure skyrocketed. Doctors wouldn’t listen to me and forced me to leave with high blood pressure. As a result, my optic nerve ruptured and I lost vision in my right eye. 

For years, I was angry and depressed. At 23 I lost my best friend to this disease and I realized that, for any of us with sickle cell, another day is not a guarantee. I know that when I walk into the ER, I might not walk out. 

It took me years to come to terms with my experiences. But every day, I choose to wake up, to take care of my family, and to work, even though relentless pain is my constant companion.

It’s exciting that there is finally a potential cure, especially for such a horrible illness, but the speculation around the price is also very discouraging. With other gene therapies carrying price tags of over $2 million, I’m worried the cure will be priced out of reach for me and my fellow patients.

How is it possible that we’ve finally come up with a cure for sickle cell — but drug industry greed threatens to make it inaccessible to people who have the disease? Sicklers are typically middle-to-lower class and will definitely not be able to afford a treatment that runs into the millions.

If you find a cure and price it out of our reach, are you really helping us at all?



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