Groundbreaking Docuseries Focuses on the Devastating Impacts of Sickle Cell Disease

Kenneth Braswell and Fathers Incorporated have partnered with acclaimed documentary filmmaker Janks Morton on the groundbreaking docuseries SICKLE, which brings vital attention to the devastating impacts of sickle cell disease (SCD) within the Black community.

SCD affects approximately 100,000 people in the United States, with more than 90% being non-Hispanic Black or African American. The disease occurs in about one out of every 365 Black or African American births, and about one in 13 Black or African American babies is born with the sickle cell trait.

SICKLE, the forthcoming docuseries, shines a light on Sickle Cell Warriors, highlighting their resilience and strength as they navigate life with a disease many people don’t fully understand. Through their personal stories, we hear firsthand accounts of the excruciating pain they endure, the frequent hospitalizations, and the emotional toll of living with an invisible illness. SICKLE amplifies the voices of these Sickle Cell Warriors, honors their caregivers, and highlights the professionals at the forefront of groundbreaking innovations.

Many of those with SCD struggle to receive adequate care and essential resources, often facing misdiagnosis, delayed or inadequate treatment, and skepticism from medical professionals due to the unpredictable nature of their symptoms. SICKLE seeks to change this narrative, expose systemic failures in healthcare, spark a national conversation, and advocate for greater awareness, empathy, and access to life-changing treatments.

Black Men and Sickle Cell Disease

Despite being one of the most prevalent genetic disorders, SCD remains significantly overlooked, with Black men and fathers facing unique challenges that intersect with systemic health disparities.

Black men with SCD often encounter significant healthcare disparities. For instance, individuals with SCD are more likely to be admitted from the emergency department (79.6% vs. 51.3% for non-SCD patients). They are more likely to be discharged against medical advice (4.1% vs. 1.2%). Among those who left the hospital against medical advice, patients with SCD were much more likely to be readmitted than those without SCD (46.6% vs. 26.5%).

Furthermore, Black men report experiencing negative interactions with healthcare providers. A Pew Research Center study found that 46% of Black men have had at least one negative experience with doctors or other healthcare providers, including feeling that their pain was not taken seriously.

There is limited research specifically examining the engagement of Black fathers with their children who have SCD. However, broader studies indicate that Black fathers are actively involved in their children’s lives. For instance, as reported by CBS News, a Centers for Disease Control and Prevention (CDC) study found that Black fathers are more involved in their children’s daily activities compared to fathers from other racial groups.

In the context of pediatric SCD care, studies have shown that mothers are more frequently the primary caregivers. For example, in one study, 85% of children with SCD were accompanied to medical visits by their mothers, while only 8% were accompanied by their fathers. Various factors, including societal norms, work commitments, and healthcare system dynamics, may influence this disparity.

While these findings suggest that mothers are more often present in clinical settings, they do not necessarily reflect the overall engagement of Black fathers in their children’s lives. It’s important to recognize that involvement can take many forms beyond medical appointments, such as emotional support, daily caregiving, and participation in educational activities.

Further research is needed to explore the specific roles and contributions of Black fathers in the care of children with SCD, as well as to identify and address any barriers they may face in healthcare engagement.

The SICKLE docuseries seeks to amplify the voices of individuals battling this painful disease, spotlighting their resilience and advocating for increased awareness, empathy, and improved access to life-saving treatments. Through this partnership, Fathers Incorporated reinforces its commitment to elevating critical health issues affecting Black men and families, underscoring the urgent need for greater support and understanding within our healthcare systems and communities.

Morton invites poets, painters, singers, and artists who are sickle cell warriors, have the sickle cell trait, or care for someone with sickle cell to reach out regarding possible participation in the project. Selected creators will be invited to be interviewed and have their creative process filmed for the forthcoming docuseries. Please send submissions to info@SickleDocuseries.com.