New sickle cell disease poll dispels long-held perceptions of African Americans

Sep 21 2017

Pfizer Inc., the National Newspaper Publishers Association (NNPA), and scholars from Howard University today 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 US who self-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%) were aware that it disproportionately affects people of African descent, 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 US, and most people living with sickle cell disease are of African descent. In fact, SCD 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 US. "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% of respondents indicated that they believed health care professionals to be trustworthy.
• Over three quarters (79%) of respondents described SCD as "more important" or "just as important" as other health conditions.
• Most respondents (76%) 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%) 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.