Benjamin Clark has never been shy about how his life is affected by having sickle cell disease, which is marked by recurrent episodes of pain as the irregularly shaped red blood cells cause blockages of blood vessels.
Over the years, he and his mother, Deborah Clark, have seen awareness of the sickle cell disease rise in the public conscious and then dwindle as other issues took precedence over the inherited disease.
Diagnosed at birth, the 25-year-old D.C native held a nearly 15-year stint as the “poster child” for the lifelong debilitating blood disease for a local organization, during which time his face graced a billboard in Kentucky for a sickle cell benefit event. More than a dozen articles have been written about his tremendous fight with the disease including 163 hospitalizations, 86 blood transfusions and one major surgery.
Benjamin said he “didn’t mind” serving as the face of the fight against the disease “because I knew there was a purpose.” He said his goal was to educate people with the disease about its effects and to encourage others with the disease to pursue their dreams.
The number of people dying globally from sickle cell increased 45 percent between 1990 and 2013. The disease affects nearly 100,000 Americans.
Though it affects people of many ethnic backgrounds, people of African descent are most likely to have the disease. In the United States, the disease occurs in one of every 365 African-American births. Access to care and innovative treatments are among the most significant challenges faced by people with the disease.
Benjamin said much process has been made in raising sickle cell awareness, but more works need to be done. For instance, he said he has been called a “drug addict” by hospital staff while being hospitalized for one of numerous pain crises caused by the disease.
Lack of standard care protocols bolster stigmas surrounding sickle cell patients, whose pain crises are typically treated in the emergency room with pain medications, mainly opioids.
“When I get sick, I even like to educate the nurses,” Benjamin said.
Dr. Krupa Sivamurthy, senior director of medical affairs for sickle cell disease at Pfizer, said stigmas regarding sickle cell patients will remain until awareness is raised for the disease.
The pharmaceutical giant and the National Newspaper Publishers Association (NNPA), the trade organization for over 200 African-American newspapers, announced Friday a partnership to raise awareness of sickle cell disease and the need for improved patient care.
The first initiative under the collaboration will be a national poll, conducted in partnership with Howard University’s Interdisciplinary Research Team, to assess awareness, the challenges of living with the disease and the importance of clinical trial participation in helping researchers succeed in developing new treatments.
“There can’t be passion if there is not awareness,” said NNPA President Benjamin Chavis. “Together with Pfizer, we look forward to providing sickle cell disease education that can underscore the importance of improving quality of care in the community.”
Results of the poll will be released in the summer.