Sickle cell disease is a lifelong and debilitating disorder that affects red blood cells.ii It is the most common inherited blood disorder in the US, and most people living with sickle cell disease are of African descent.iii In fact, SCD occurs in one out of every 365 African American births.iv
“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.i
- Over three quarters (79%) of respondents described SCD as “more important” or “just as important” as other health conditions.i
- 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.i
- 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.v
- 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.i
“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.
About the Poll
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. Poll respondents were selected from individuals who had agreed to participate in the survey through the Howard University Interdisciplinary Research Team. Results are weighted to the African American population projected by the Census in the American Community Survey. The poll was conducted using a nationally representative survey of the African American population to accurately measure the knowledge, perceptions, and behavior of the community with regard to sickle cell disease.
Pfizer Rare Disease
Rare disease includes some of the most serious of all illnesses and impacts millions of patients worldwide,vi representing an opportunity to apply our knowledge and expertise to help make a significant impact on addressing unmet medical needs. The Pfizer focus on rare disease builds on more than two decades of experience, a dedicated research unit focusing on rare disease, and a global portfolio of multiple medicines within a number of disease areas of focus, including hematology, neuroscience, and inherited metabolic disorders.
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About the National Newspaper Publishers Association (NNPA)
The NNPA is a national trade association of 211 Black and women-owned U.S. media companies with a weekly print and digital readership of over 20.1 million Black Americans. The Black Press of America is 190 years old. The NNPA is known as the Black Press of America and the Voice of Black America, because its member publishers are trusted, respected and embedded in their local communities where they provide significant influence and impact. Learn more about the NNPA.org.
i Data on file. Pfizer Inc, New York, NY.
ii National Heart Lung and Blood Institute. What is sickle cell disease? https://www.nhlbi.nih.gov/health/health-topics/topics/sca. 2016. Accessed August 25, 2017.
iii National Human Genome Research Institute (NHGRI). Learning about sickle cell disease. https://www.genome.gov/10001219/learning-about-sickle-cell-disease/. 2016. Accessed July 31, 2017.
iv Centers for Disease Control and Prevention. Data and statistics. http://www.cdc.gov/ncbddd/sicklecell/data.html. 2016. Accessed August 25, 2017.
v Lebensburger JD, Hilliard LM, Pair LE, et al. Systematic review of interventional sickle cell trials registered in ClinicalTrials.gov. Clinical Trials. 2015:12(6):575-583. doi:10.1177/1740774515590811.
vi Pfizer Inc. Rare Disease. Areas of focus. http://www.pfizer.com/health-wellness/disease-conditions/rare-diseases/areas-of-focus. Accessed August 25, 2017.