New poll tracks perceptions of Sickle Cell disease among Blacks
Merdies Hayes Editort In-Chief | 9/27/2017, 9:51 a.m.
Pfizer Inc., the National Newspaper Publishers Association (NNPA), and scholars from Howard University have announced results from a new national poll designed to deepen understanding and gauge perceptions around Sickle Cell disease (SCD) among African Americans.
The poll, which included responses from adults in the United States who identified as African American, revealed that while the majority of respondents were familiar with SCD and understood the disease in general, only one-third (36 percent) were aware that it disproportionately affects people of African descent, thereby demonstrating a critical need for education and awareness.
Sickle Cell disease is a lifelong and debilitating disorder that affects red blood cells. It is the most common inherited blood disorder in the U.S., and most people living with SCD are of African descent. SCD reportedly occurs in one out of every 365 African-American births.
“These poll findings will give our readers an in-depth understanding of how Sickle Cell disease is perceived by African Americans,” said Dr. Benjamin F. Chavis, Jr., president of NNPA, a trade association of 211 African American-owned community newspapers from around the nation. “With this knowledge from the dedicated research team at Howard University, and through our collaboration with Pfizer, we can spur meaningful conversation and assess the best ways to improve disease education for those impacted in our communities.”
The poll also revealed:
• Despite long-standing historical perceptions of mistrust in medical professionals by the African American community, in this poll 91 percent of respondents indicated that they believed health care professionals to be trustworthy.
• Over three quarters (79 percent) of respondents described SCD as “more important” or “just as important” as other health conditions.
• Most respondents (76 percent) had positive or neutral attitudes toward SCD clinical trials and a majority indicated a willingness to participate in future clinical trials for SCD, given appropriate knowledge and recommendations from health care professionals.
• Historically, clinical trial recruitment obstacles have been a barrier in SCD research. In a review of 174 SCD trials, difficulty enrolling patients was the stated cause in nearly half of the trials that terminated early.
The majority (79 percent) of respondents understood the importance of disease education and expressed the need for additional current information, specifically regarding pain relief, clinical trials, and progress toward better treatment or a cure.
“We are encouraged by the poll results 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,” said Dr. Kevin W. Williams, chief medical officer, Pfizer Rare Disease. “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 poll is a key initiative under the Pfizer-NNPA collaboration. Throughout the rest of 2017, a series of articles with more information regarding SCD, its impact, as well as the common myths, is also being published in NNPA-affiliated newspapers. The poll results and information about SCD will be shared with the NNPA network and incorporated into future educational programs. More information about SCD can be found at www.Pfizer.com/RareDisease. For more information about the NNPA, please visit www.nnpa.org.
The National Poll of African Americans on Sickle Cell Disease Awareness questionnaire was conducted via a telephone interviewing system by the Howard University Interdisciplinary Research Team on behalf of Pfizer Inc. and the National Newspaper Publishers Association (NNPA) between June 15, 2017 and July 15, 2017. A total of 741 surveys were completed, drawing from 31,934 telephone calls made that resulted in polling answers from 741 individuals aged 20-70 living across the US, who identified as being of African American ethnicity.