MEET OUR GRADUATES: Alex Ramos, Sickle Cell Advocate

Since he was a little boy, Alexander Ramos dreamt of becoming a police officer. But when he lost sight in one eye after suffering two strokes, he had to put an end to that dream. At the time, he was in high school and the strokes were brought on by a genetic disorder – sickle cell anemia.

This May Ramos will be graduating from Rhode Island College with a B.A. in justice studies, with his sights set on becoming a lawyer. Though his dream of being an officer ended, his love for the legal field remained. 

At the recent Cap and Gown ceremony at RIC, Ramos was honored with the Maryann Hawkes Award in Justice Studies in recognition of his excellent GPA and his advocacy around improving the quality of care for persons with sickle cell anemia.

People with sickle cell anemia have abnormal red blood cells. Instead of being round, the cells are crescent-shaped or sickle-shaped and carry less oxygen than typical red blood cells. These cells are more hard and sticky and don’t move as easily and smoothly through the blood vessels, which can lead to blockages. When the blood flow is blocked, it brings on severe pain or what is called sickle cell crisis.

“These crises were pretty frequent for me,” he says. “From age nine to the end of high school, I was in the ER practically every other month.”

But it wasn’t until his sophomore year at Rhode Island College that Ramos began advocating for patients like himself.

“I read a paper written by my hematologist [an expert in a wide range of blood conditions] about the disparities in funding and research for sickle cell anemia. He found that sickle cell, which predominantly affects people of color, receives less funding and research than cystic fibrosis, a similar blood disorder that predominantly affects white people.” 

Ramos wants that to change.

There’s also a lack of sensitivity in emergency rooms toward individuals having a sickle cell crisis, he says. Episodes of severe pain are a major symptom of sickle cell anemia. The pain can be sharp, stabbing, intense, or throbbing and can affect any part of the body. It can last from a few hours to a few days.

“But when sickle cell patients visit emergency rooms they’re often accused of being drug seekers,” he says. As a consequence, they experience long wait times. Ramos recalls once arriving at the ER at noon and not being treated until two in the morning.

Two years ago he joined the Rhode Island Sickle Cell Patient Action Committee (PAC). “We’re a group of sickle cell patients who are advocating for change in the Rhode Island healthcare system and, by extension, the national healthcare system,” he says.

“A few years ago when the group was getting started, I took Professor Mikaila Arthur’s “Disability and Justice” class and did a project where I created a call-to-action letter addressed to Lifespan, which is now Brown University Health. It described the issues patients have been having in the ER. I suggested ways to improve care for patients. I sought PAC’s help in drafting the letter. We then sent the letter to all the hospitals within the Lifespan system.”

The response was positive. “Since then, there have been reports from patients both in and outside of PAC who have reported better care,” he says. “I myself have noticed improvements in things like wait times. Recently I went to the ER and was able to get treated within a few hours. I think the hospitals are starting to take notice of our group.”

PAC is currently working on ER passports. This is a physical card that sickle cell patients can take with them to the ER that has their name, condition and their typical care plan on it.

In addition, Ramos and his hematologist frequently make presentations at The Warren Alpert Medical School of Brown University. Their goal is to express to future doctors the importance of having a clear understanding of the symptoms and needs of sickle cell patients.

Through the Maryann Hawkes Award in Justice Studies, the entire faculty commend Ramos’ passionate determination to inspire community support around sickle cell anemia and his tireless effort to bring about legislation that would ensure better care, research and policies within the healthcare system.

“I met Alex when he was a student in my Justice and Disability course,” says Professor Mikaila Arthur. “I was immediately impressed by his insight, intelligence and commitment to building a better world. I know he has the potential to make a difference as a lawyer and I so look forward to seeing what he continues to accomplish as his educational and advocacy journey continues.”
 

Learn more about RIC’s B.A. in justice studies program.