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The National Newspaper Publishers Association (NNPA) has teamed with biopharmaceutical company Pfizer in a joint effort to raise awareness of sickle cell disease.
The two organizations held a presentation Friday at the NNPA’s annual convention to address the collaboration, just days after the death of rapper Prodigy of Mobb Deep, who suffered from the disease.
“In the United States, sickle cell disease is a rare disease,” Dr. Kevin Williams, Pfizer’s chief medical officer, said in his opening remarks. “And the way that we define rare disease in the United States is it impacts less than 250,000 patients in the country.”
According to Pfizer, sickle cell affects about 100,000 people nationwide, though the disease is more prominent in other nations.
Despite the numbers, there is a sense of urgency wherever sickle cell exists. Those living with the lifelong illness, primarily men and women of African descent, are confronted daily with challenges and issues.
“As you can imagine, there are emotional highs and emotional lows of lifelong illness that can cause such pain and such fatigue,” Williams said.
Following a testimonial video of a young girl living with sickle cell, the conversation shifted to the lack of involvement by the black community in medical research.
“It’s important to have engagement and involvement from people in the community,” Williams said. “One of the challenges in developing drugs for sickle cell disease is that [the needs of minorities] are underrepresented in clinical trials.”
African-Americans make up 13 percent of the U.S. population, yet represent only 5 percent of clinical trial participants, Williams said. This hinders the opportunity to successfully develop a drug to fight sickle cell disease.
As noted in the discussion, there has long been a concern in the black community that one may be mistreated in medical facilities due to a history of brutality. Incidents such the Tuskegee Experiment and the abuse of Henrietta Lacks contribute to the skepticism.
Deborah Clark testified that her son Benjamin faces discrimination by medical staff even today. Benjamin, who has sickle cell, has been denied medication under the assumption that he was misusing medication.
“The doctors at the hospital have treated Benjamin with so much disrespect,” Clark said. “He’s been called a drug addict, told [that he’s] not in pain. My son was in so much pain he was talking about giving up.”
Racism is partly to blame for the mistreatment of black patients by medical staff, Jim Washington of the Dallas Weekly suggested during the discussion.
“If you don’t have a component to deal with race in this country, you’re not going to be able to deal with a racist doctor,” Washington said. “We have to bring that to the table if we want to have effective change.”
The conversation concluded with insight on how the Black Press can combat the mistreatment of black patients. Publishers stood to their feet and reminded one another of their duty of journalists to expose wrongdoing.
Confident in the partnership of NNPA and Pfizer, Williams’s final words highlighted the importance of the collaboration.
“[Pfizer] got involved in sickle cell disease, because we believe we can make a difference and we are committed to this,” Williams said. “That’s why we’re here today. That’s why we’ve entered this collaboration with the NNPA, so we can have dialogue and figure out what it is that we can bring to the table.”