You really don’t know a company, until you know the people who work there.
Those were the introductory words of National Newspaper Publishers Association President and CEO Dr. Benjamin F. Chavis Jr., as he introduced Dr. Kevin Williams, the chief medical officer for Pfizer’s rare disease unit, who discussed the impact of Sickle Cell Disease (SCD) in the African-American community.
At the NNPA’s summer convention in Prince George’s County Md., Williams addressed publishers and others on the serious nature of the illness, an inherited genetic disease that affects hemoglobin, the oxygen-carrying protein within red blood cells (RBCs).
“While normal red blood cells are flexible and oval-shaped, individuals with SCD have sharp, crescent-shaped RBCs that have trouble passing through the body’s blood vessels, irritating the vessels’ lining,” Williams said, explaining SCD.
That irritation leads to the production of sticky proteins that cause RBCs to clump together, along with other cells in the blood, and creates blockages in blood flow, Williams added.
“The reduced flow leads to severe pain and organ damage, like the heart, brain, eyes, liver, lungs and spleen—causing the inability to fight certain infections,” Williams said.
Sickle Cell Disease is more prevalent among blacks compared to whites.
Statistics provided by Pfizer revealed that one in 14 African-Americans have the sickle cell trait at birth while one in 500 blacks have the diseases when they are born.
An estimated 312,000 children were born with SCD in 2010 while, in 2013, an estimated 176,200 deaths resulted from the disease around the globe.
“Clearly, the disease has had a tremendous impact on the African-American community,” said Williams, who along with Pfizer have partnered with the NNPA to raise awareness about SCD.
The first initiative under the partnership is a national poll conducted in collaboration with Howard University’s Interdisciplinary Research Team.
The goal is to assess the awareness of SCD, the challenges of living with the disease, and the importance of clinical trial participation in helping researchers succeed in developing potential new treatments.
Pfizer and NNPA publishers also want to bring attention to the everyday suffering of SCD patients, many of whom described the constant fatigue associated with living disease; one participant said that the pain was a never-ending battle, and it felt like living in Hell.
Studies have also proven difficult, as many African-Americans have avoided participating in clinical trials due to long-standing fear and distrust of the healthcare system.
In a review of 174 sickle cell disease trials, difficulty with enrolling patients was among the stated causes in nearly half of the 30 percent of the trials that were terminated early, Williams noted.
Chavis, Williams and others noted that the partnership between Pfizer and NNPA might help.
“We get an opportunity to work with Pfizer on a commitment to improve the quality of life in black America” said Chavis. “This collaboration with Pfizer provides an opportunity for the NNPA to inform and educate the readers of our 211-member, black-owned newspapers in more than 70 markets across the country on Sickle Cell Disease, an often misunderstood disease that has a profound impact on the health and well-being of those affected.”
He continued: “Together with Pfizer, we look forward to providing sickle cell disease education that can underscore the importance of improving quality of care in the community.”
As part of the collaboration, Williams will write a regular column for the NNPA Newswire and BlackPressUSA.com discussing the genetic disorder.
Also, the results from the national poll are expected to be released in September, and Pfizer and NNPA officials are hoping that it will help more African-Americans seek proper health care and obtain better guidelines for treatment.
“We will use the poll to provide additional context…have a better understanding of the perceptions related to clinical trials,” said Jennifer Lichtner, the global marketing lead for SCD in Pfizer’s rare disease unit.
The poll results and information about SCD will be shared with the NNPA network and incorporated into educational programs at NNPA events.
Pfizer will also post and share information about the poll with a goal toward helping to assist more African-Americans and others in underserved and underrepresented communities.
“At Pfizer, we are committed to delivering life-changing therapies to people living with rare diseases, like sickle cell disease. Our commitment also goes beyond clinical research to supporting the rare disease community through innovative collaborations,” Williams said. “Working together, we hope to improve awareness and ultimately address the unmet medical needs of sickle cell disease patients.”