WXXI AM News

Fighting through stigmas: Some say racial disparities have long affected sickle cell funding

Sep 15, 2021

Destiny Hannah, 22, was born with sickle cell disease.
Credit Max Schulte / WXXI News

Destiny Hannah stands in her Greece kitchen, performing a daily ritual: She downs a B-12 vitamin, followed by a shot of beet juice and a milligram of folic acid.

She takes these supplements to help boost her red blood cells and ultimately improve the flow of oxygen from her lungs to various parts of her body -- a simple biological function that sickle cell patients don’t take for granted. 

“I can definitely feel when my body's like breaking down on me,” said Hannah, who was born with the illness. 

Sickle cell disease is a blood disorder that shortens the lifespan of red blood cells and causes them to change shape from round to more crescent-like, or sickled. The altered cells can interlock while flowing through the bloodstream, disrupting blood and oxygen flow and resulting in an intense episode.

“It’s like a burning, excruciating pain,” Hannah said, “to the point where it can just knock me out sometimes.” 

The disease originated in areas where malaria was most prevalent -- predominantly parts of Africa, according to researchers, and it continues to plague communities of color. According to the Centers for Disease Control and Prevention, one out of every 365 African Americans and one out of every 16,000 Hispanics are born with sickle cell. 

Some physicians believe that since the disease is more prevalent in people of color, it’s historically received far less attention and research dollars. 

Hannah says the pain she feels during her sickle cell episodes often knocks her out.
Credit Destiny Hannah

“Certainly 20 or 30 years ago, there was a lot of concern that sickle cell disease was not getting the funding that pediatric cancer got, or that other rare genetic diseases received,” said Dr. Jeffrey Andolina, UR Medicine’s director of pediatric bone marrow transplantation. 

He said he believes racial inequities have been a factor, an opinion shared by one of his former patients, Stephanie Ramos. 

Ramos, who is Hispanic, said her trips to the emergency room for painful sickle cell episodes were met with skepticism from hospital staff. 

“You have doctors looking at me because I'm Latina. You have doctors looking at others who are African American, and they're saying, 'Are you really in pain?'” Ramos said.

And while Hannah said she feels very supported by her medical team, she has heard from other sickle cell patients that the racial bias is real.

“There are stigmas when you go into the hospital that all these people are drug-seeking,” Hannah said. “They're only here for the pain meds to get their fix. When in reality, we're in excruciating pain.” 

They’re far from alone in their experiences, according to Common Ground Health CEO Wade Norwood. 

In a report titled “The Color of Health,” which was released in July, Common Ground Health highlighted the stark health disparities the Black community faces as a result of racism.

“This history of racial bias is not a bug,” Norwood said. “It's a feature of the American health care system.” 

However, Norwood said he is beginning to see a change in the way people acknowledge these disparities. 

Stephanie Ramos, right, and her twin brother pictured as toddlers.
Credit Stephanie Ramos

  

“The fact that there's community ownership of this issue is in and of itself, a dramatic improvement,” he said.

Andolina has also seen some advances within the last decade. He said more emphasis has been placed on sickle cell disease.

“There have been a lot of grassroots groups for sickle cell disease, and a lot of really invested doctors that are really pushing it forward,” Andolina said.

This new awareness has opened ways for more research and government funding, which helped Ramos. After living with sickle cell for more than two decades, Ramos accepted the risk to reverse her disease through a bone marrow transplant performed by Andolina.

“If I'm gonna go out, I'm gonna go out swinging. I'm gonna go out fighting,” Ramos said.

Stephanie Ramos, her twin brother, and Dr. Jeffrey Andolina photographed in Ramos's recovery room after the bone marrow transplant was completed.
Credit Stephanie Ramos

  

Luckily, her twin brother was a perfect match, and the procedure was a success. Ramos has now been living free of sickle cell for seven years. 

Hannah hopes for a similar outcome. Her dad is a 50/50 match, and she now anxiously awaits her procedure date.

“It's going to be a whole new body, whole new life, and I'm really excited for it,” Hannah said.