The Towers Auditorium at Howard University Hospital was packed recently for the sixth annual World Sickle Cell Awareness Symposium, as researchers talked about advancements in the race to cure a disease that disproportionately affects people of color.
Citing Bureau of Health statistics, researchers at Johns Hopkins School of Medicine said in 2013 that while sickle cell disease affects between 90,000-100,000 Americans annually, the majority of those are African American.
In the 1970s the average life expectancy for someone with sickle cell was less than 20 years of age. By the early 1990s, the median life expectancy for those with the most severe form of the disease, was 42 years of age for men and 48 years of age for women. Today there are additional research pockets of promise
“We are really on the cusp and I just want something to happen. They have been saying that we are on the cusp since I was born,” said Elise Holgate, 33, a District resident with sickle cell disease who attended the conference.
Dr. James Taylor, director of the HU Center for Sickle Cell Disease, told The Washington Informer, “This is an important meeting because one of the barriers is connecting the researchers with the patients. They have no idea what these patients are going through.”
Angela Mason, community outreach coordinator for the HU Center, said the theme for this year’s event was “Cure Sickle Now: Patient Engagement Symposium.”
“We focused more on the patients this year to make them aware of what is available to them and to be more inclusive,” Mason said.
Seated front and center were two rows of students who were part of the Howard’s Health Journalism workshops for high schoolers, sponsored by the Dow Jones News Fund and the Robert Wood Johnson Foundation.
During the conference, a student asked about the mental aspects of the disease, with one of the panelists replying it takes a wrenching toll on those suffering that includes people suffering with chronic pain.
Holgate said most people have no idea what she has gone through.
“They say, ‘you only have sickle cell,’ or ‘you look good,’ but I have done many trials,” she said. “The trial for hydroxyuria was so hard that I lost my hair.
“It is extremely important to know what is going on behind the scenes between the government and private industry,” Holgate said. “The thing that has helped the most is Papuan juice. I have been extremely fortunate.”