A “National Poll of African-Americans on Sickle Cell Disease Awareness” conducted earlier this year has revealed that, while most African-Americans are familiar with sickle cell disease (SCD), only about one-third are aware that it affects people of African descent in a disproportionate way.
The findings highlight the need for more education and awareness, as SCD is the most common inherited blood disorder in the country and most people living with SCD today are of African descent. In fact, SCD is diagnosed in one in every 365 African-American births.
A total of 741 surveys were completed by individuals ages 20 to 70 living in the U.S. The poll was conducted by phone interviews, which took place from June 15 to July 15.
The poll was designed to grasp the understanding and perceptions around SCD by African-American adults in the U.S.
Findings revealed that despite long-standing perceptions of historical mistrust in medical professionals, 91 percent of respondents believed the healthcare system was trustworthy; 79 percent of respondents thought SCD was “more important” or “as important as” other health conditions; and 79 percent of patients expressed an understanding of the importance of disease education and awareness, specifically regarding pain relief, clinical trials, and drug development.
Importantly, the poll found that 76 percent would agree to participate in sickle cell disease clinical trials, given the appropriate information and recommendations from trusted healthcare professionals. This finding is particularly important due to the historical significance of the lack of participation of African-Americans in medical trials.
Reportedly, in 174 SCD trials assessed, difficulty enrolling patients was the most stated cause in nearly half the trials that were forced to end earlier than predicted.
“These poll findings will give our readers an in-depth understanding of how sickle cell disease is perceived by African-Americans,” Benjamin F. Chavis, president of the NNPA, said in a press release. “With this knowledge … we can spur meaningful conversation and assess the best ways to improve disease education for those impacted in our communities.”
Kevin W. Williams, chief medical officer of Pfizer Rare Disease, said the company is encouraged by the results of the poll “as they have allowed us to gain a better understanding of the perceptions of SCD among African-Americans.
“These insights will not only help us determine how to further enhance disease education and awareness, but will also help us educate SCD patients and their families about the importance of clinical trials in bringing novel treatment options to market for those in need,” Williams said. “Through our work with patients and the community, as well as through research and development and clinical trials, Pfizer remains committed to addressing the unmet needs of people affected by sickle cell disease.”
The NNPA is a national trade association of 211 black and women-owned U.S. media companies with a digital audience of more than 20 million black Americans.
The Pfizer-NNPA collaboration will continue to publish a series with more information regarding sickle cell disease, its impact, and common misconceptions in NNPA-affiliated newspapers through the rest of 2017. The results from this poll will be shared with the NNPA network and incorporated into future educational programs.