Surviving and Advocating for a Better Future for Those with Sickle Cell

By Emil DeAndreis

One night, seven-year-old Cory Lewis woke up screaming when a stabbing sensation lanced through his leg. At the hospital, bloodwork revealed that Cory had sickle cell disease.

Young Cory did not let the diagnosis of sickle cell—an inherited disease that impedes the movement of red blood cells and causes intense pain crises, impacting African American individuals at higher rates—derail him. His family, sensitive to the hardships of sickle cell on top of the loss of Cory’s father, who died when he was a baby, resolved to ensure Cory knew he was loved and kept busy with fun activities.

“I was running around, climbing trees, tripping on rocks,” recalls Cory, now 29. “My grandparents lived in a double-wide trailer off a dirt road with chickens and pigs and lemon trees. I was always going fishing with my grandpa. My mom tried to keep me happy, took me to theme parks; my grandparents took me to gymnastics and the water park. But sometimes, my body would remind me I need to sit my ass down.”

One winter in middle school, while his family was snowed in for two days because of a blizzard, Cory experienced pneumonia-like symptoms—chest pain, cough, and fever—with no way of getting to the hospital. When the roads eventually cleared and he made it to the hospital, he was told he had experienced acute chest syndrome, a complication that is the main cause of death for people living with sickle cell.

A lover of music, Cory joined the middle school band, playing trumpet and tuba, but his musical phase was short-lived. Dehydration is a constant risk with sickle cell, and having to frequently empty his instruments’ ever-filling spit valves was a visual representation of his body’s inability to retain fluids.

“Not to mention, I would get tired. And I couldn’t breathe, and then they want you to be in the parade, and walking with that thing,” he laughs, referring to the heavy tuba. “I couldn’t do it.”

A QUEST FOR INDEPENDENCE

After high school, Cory briefly lived with his grandparents in Tallahassee before deciding to set out on his own. He packed up a moving truck and drove to Atlanta, where he had no connections or job prospects. To make matters worse, as soon as he got a job, his health insurance was cut off.

“I lost all my SSI [Supplemental Security Income], my Medicaid,” recalls Cory, who now lives in Decatur, Georgia. “It was like, ‘Oh, you just thought you could pull up to the hospital when you want to? No, you can’t.’ Not to mention, when I did pull up in the midst of a pain crisis, I’d have doctors not believing me, or thinking I’m drug-seeking.”

After five years of receiving Medicaid and SSI, Cory found himself needing to transition from child to adult health care. Unfortunately, with no one to help him figure out how the process worked, he lost those benefits. “I really needed to get on my grind, to find a way on my own,” he shares. “With managing bills alone, with no vehicle, and still doing what I could to manage my health, I did whatever I could to make it to the next day. That’s the only way I was able to survive.”

Cory experienced close calls in these gaps of coverage, made worse by providers who were suspicious or did not appreciate the complexities of sickle cell disease.

For instance, he shares, “When I recently had kidney failure, the doctor did not believe I was having a crisis,” refusing to order tests because he believed Cory wasn’t showing signs of jaundice. (Jaundice can be more difficult to see and diagnose in people of color.) One nurse handed him cups of water, “saying I was just dehydrated,” Cory remembers. “If a second nurse didn’t come up from behind her and squeeze my leg and say, ‘No, you have edema,’ I probably wouldn’t be here. I don’t want that to ever happen again.”

IMPROVING LIFE FOR OTHERS WITH SICKLE CELL

Cory channels his past experiences, good and bad, into a mission to spread awareness and provide aid to the vulnerable populations impacted most by sickle cell disease. He is an ambassador for Sick Cells, a nonprofit organization seeking to “influence decision-makers and propel change through policy,” and also is the executive director of RedMoon Project, with a similar goal to eliminate stigma around sickle cell. Recently, he has advocated for legislation calling for the collection of current data on sickle cell. 

“If we’re limited to data from 2018 and 2019, a lot has happened since then,” Cory explains.

He notes that biracial families, such as those with one white and one Black or Hispanic parent, are running into new challenges when their children live with conditions that more predominantly affect people of color, such as sickle cell. “It’s changing the way they’re receiving health care,” Cory says. “They’re experiencing racism and stigma for the first time.”

He adds, “We still need to consider social determinants of health, mental health, and the cost of this disease if we want to effectively help people.”

There is currently no cure for sickle cell. Current research focuses on gene editing technology, a process that involves genetically correcting cells in individuals living with sickle cell, but it is new enough that many people living with the disease are still wary.

“We don’t want to experience sickle cell or pay prices anymore, but am I gonna come out of this therapy even worse? People are fearful of that,” Cory shares.

ADVOCACY FOR ALL

Cory, who is gay, knows the importance of incorporating LGBTQ+ issues and advocacy into his efforts to raise awareness of sickle cell and other diseases disproportionately affecting Black individuals. He periodically speaks to people at gay clubs and drag shows about health issues affecting them. Concern, research, and funding have been historically focused on sexually transmitted infections such as HIV in those communities, he explains, but less attention and funding are given to other conditions with stigmas surrounding them—something Cory has experienced firsthand.

At hospitals, even with doctors who he trusts and respects, he has experienced skepticism about his symptoms. He shares that providers he has seen, rather than looking at his health as a whole, often immediately default to asking if he’s been tested recently for HIV and other sexually transmitted infections, simply because they know he is gay.

Despite his gaps in health care and the suspicion he’s dealt with from health care providers, Cory avoids resentment and doesn’t focus on what is deficient with the system, something he likens to spinning wheels.

“When I go to leadership summits, I don’t want to hear people complain about what doctors and physicians are not doing,” he says. “My position is: what can we be doing to help them, to give them solutions? Because at the end of the day, they got the medical degree, and y’all don’t. So regardless of how much you complain about what they’re not doing, give them the tools and information they need. And that’s why I’m with Sick Cells, because we focus on solutions.”

Cory’s experiences have taught him that fair treatment is not always a guarantee.

“Some call it a struggle, some call it a trial, but for me, it taught me as a Black man that I have to be more and do more, regardless of if I’m living with an illness that could potentially put me down,” he shares.

Recently, Cory hiked 40 miles in six days in the Bighorn Mountains of Wyoming. He cried the first day, overwhelmed with both pride and fear, unable to believe what he’d just done and what he still had ahead of him. Then he picked himself up and he went on the next day, and the next.

This is how Cory approaches his life and his advocacy:

“I did that. I survived that. And if I can do that, I can do the next thing.”