Pfizer and the National Newspaper Publishers Association (NNPA) are collaborating to increase awareness about sickle cell disease and to discuss the need for improved patient care, as well as the importance of clinical trials.
The National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH) estimates that sickle cell disease currently affects up to 100,000 Americans, making it the most common inherited blood disorder in the U.S.
The disease affects many ethnic groups, but people of African descent seem to be hit the hardest by the blood disorder, say researchers at the American Society of Hematology. The Centers for Disease Control and Prevention (CDC) statistics show that sickle cell disease occurs in approximately one out of every 365 African-American births.
Access to care and delivery of novel treatments are the most significant challenges faced by people living with sickle cell in the U.S.
The first joint initiative will be a national poll, conducted together with an interdisciplinary team from Howard University, in Washington, D.C. The objective is to evaluate people’s awareness of sickle cell disease, the challenges of living with the disease, and the real importance of clinical trial participation in helping researchers develop innovative treatments.
Clinical trial participation poses a true challenge to researchers. Difficulty enrolling participants was reported as being the cause for early termination in nearly 30 percent of clinical trials in a review of 174 sickle cell clinical studies.
Once the poll is finished, results and information will be collected and shared with the NNPA network and incorporated into educational programs at NNPA events.
“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,” Benjamin F. Chavis Jr., president of NNPA, said in a press release.
“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,” he said.
Kevin Williams, chief medical officer for Pfizer’s rare disease unit, said the company’s commitment 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,” Williams added.