Pfizer Inc. and the National Newspaper Publishers Association (NNPA), a trade association of more than 200 African-American-owned community newspapers from around the United States, are collaborating to raise awareness of sickle cell disease, a lifelong and debilitating genetic disorder that affects red blood cells.
People with rare diseases, like sickle cell disease, have unique and complex challenges. The first initiative under the collaboration will be a national poll, conducted in partnership with Howard University’s Interdisciplinary Research Team in Washington, D.C. The goal is to assess the awareness of sickle cell disease, the challenges of living with the disease and the importance of clinical trial participation in helping researchers succeed in developing potential new treatments. In a review of 174 sickle cell disease trials, difficulty enrolling patients was the stated cause in nearly half of the 30 percent of the trials that were terminated early.
“This collaboration with Pfizer provides an opportunity for 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,” said Benjamin Chavis Jr., NNPA president. “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.”
Sickle cell disease is the most common inherited blood disorder in the United States, affecting nearly 100,000 Americans. Although it affects many different ethnic groups, the majority of people with sickle cell disease are of African descent. In the United States, sickle cell disease occurs in approximately one out of every 365 African-American births. Access to care and delivery of innovative treatments prove to be among the most significant challenges faced by people living with sickle cell disease in America.
“At Pfizer, we are committed to delivering life-changing therapies to people living with rare diseases, like sickle cell disease,” said Kevin Williams, chief medical officer for Pfizer’s Rare Disease unit. “Our commitment also goes beyond clinical research to supporting the rare disease community through innovative collaborations. Working together, we hope to improve awareness and ultimately address the unmet medical needs of sickle cell disease patients.”
The poll results and information about sickle cell disease will be shared with the NNPA network and incorporated into educational programs at NNPA events.
