Do you know how much and how often sickle cell disease truly affects blacks? According to Sickle Cell Anemia News, a “National Poll of African-Americans on Sickle Cell Disease Awareness” revealed that, while most blacks are familiar with sickle cell disease, 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 sickle cell disease is the most common inherited blood disorder in the country and most people living with sickle cell disease today are of African descent. In fact, sickle cell disease is diagnosed in one in every 365 black births.
The Poll
The poll was created collaboratively by Pfizer and the National Newspaper Publishers Association (NNPA) and conducted by scholars from the Howard University Interdisciplinary Research Team.
A total of 741 surveys were completed by individuals ages 20 to 70 living in the U.S and the poll was conducted by phone interviews.
The poll was designed to grasp the understanding and perceptions around sickle cell disease by black adults in the U.S.
The Results
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 sickle cell disease 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.
The Reluctance of Clinical Trials
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 blacks in medical trials.
Reportedly, in 174 sickle cell disease 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 sickle cell disease among blacks.
“These insights will not only help us determine how to further enhance disease education and awareness, but will also help us educate sickle cell disease 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 publish a series with more information regarding sickle cell disease, its impact, and common misconceptions in NNPA-affiliated newspapers. The results from this poll was shared with the NNPA network and incorporated into future educational programs.
For more information on sickle cell disease, visit our Health Conditions page on BlackDoctor.org.
SOURCE: SickleCellAnemiaNews.com, July 28, 2019, Sickle Cell Disease Poll of African Americans Finds Only A Third Aware of SCD’s Racial Disparities
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