A new poll aimed at increasing awareness and understanding of sickle cell disease among African-Americans has revealed that while the majority of respondents were familiar with the illness, only one-third – 36 percent – realized that it disproportionately affects people of African descent.
The poll also helped to dispel a long-held myth that African Americans typically shun clinical trials.
A partnership that includes Pfizer Inc., the National Newspaper Publishers Association and Howard University announced the findings from the poll at a news conference at the National Press Club in Washington on Thursday, Sept. 21.
The poll revealed that, despite long-standing historical perceptions of mistrust in medical professionals by the Black community, 91 percent of respondents indicated that they believe health care professionals are trustworthy.
More than three-quarters – 79 percent – had positive or neutral attitudes toward sickle cell disease (SCD) trials and a majority indicated a willingness to participate in future clinical trials for SCD, given appropriate knowledge and recommendations from health care professionals.
“Our core belief is that every patient counts, especially when it comes to rare disease,” said Michael Goettler, the global president of Pfizer Rare Disease.
“When you have a rare disease, often you feel lonely and your physician may not be able to help you,” Goettler said, noting that the poll results provide a basis for Pfizer to seek more detailed assistance for sufferers.
In March, the NNPA, Pfizer and Howard University decided to collaborate in an effort to affect change.
The groups noted that, despite having the greatest burden for SCD, there’s limited research regarding African-Americans’ knowledge and thoughts about clinical trials that study the health impacts of the illness.
“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 and CEO of the NNPA, a trade association of 211 African-American owned community newspapers from around the country.
“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,” Chavis said.
Dorothy Leavell, chair of the NNPA, said she’s pleased to be a part of a group delivering “good news” as well as the research that Pfizer continues to embark upon on behalf of SCD sufferers.
SCD remains as a lifelong and debilitating disorder that affects red blood cells and it’s the most common inherited blood disorder in the U.S. Most who live with SCD are of African descent and the disease occurs in one out of 365 African-American births.
The life expectancy rate in America hovers in the mid-40s, said Dr. Kevin Williams, the chief medical officer for Pfizer Rare Disease.
Williams also writes a regular column about SCD for the NNPA, titled “Ask Dr. Kevin.”
“These insights [from the poll] 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.
Researchers made 31,934 telephone calls for the poll conducted between June 15 and July 15. A total of 741 individuals aged 20 to 70 living across the country who identified as being of African-American ethnicity, responded to the survey.
The majority of respondents (79 percent) said they 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.
“It’s not surprising for us that a majority of our participants understood and were previously aware of sickle cell disease,” said Dr. Terri Adams, the dean of arts and sciences at Howard University.
“The overwhelming majority understood that it’s a disease – a blood disorder,” Adams said.
“There was a willingness to participate in [SCD] clinical trials. However, 82 percent had very or somewhat negative attitudes toward clinical trials in general, so there’s still a general mistrust in clinical trials,” she said.
Researchers and officials at Pfizer and the NNPA each said they hope to continue to educate patients, family members and primary care doctors about SCD clinical trials.
“Close to 20 percent said they were unsure of how it was inherited and this presents a problem because if you don’t know how it’s inherited, you may be putting your offspring at risk,” Adams said.