SICKLE CELL DISEASE

A Legacy of Discovery, Struggle, and Hope Illustration: Adobe Stock

The story of sickle cell disease (SCD) began in 1910 with the cases of Walter Clement Noel (1884 – 1916) and Ellen Anthony (1885 – unknown). Noel, a Grenadian dental student in Chicago, and Anthony, a Virginian cook and housemaid, represented vastly different socio-economic backgrounds. Yet, they both endured the debilitating symptoms of a disease caused by misshapen red blood cells that block blood flow, leading to organ damage and excruciating pain. In 1940, scientists identified the genetic mutation responsible for SCD, making it the “first molecular disease.” This milestone not only advanced SCD research but also provided a foundation for understanding other genetic conditions.

Progress in Early Diagnosis and Screening

Newborn screening (NBS) revolutionized early detection and care for babies with SCD. The Sickle Cell Disease Control Act of 1972, supported by activists like the Black Panther Party, provided federal funding for screening programs, making SCD the first genetic disease targeted by a federal initiative. New York led the way in 1975 by mandating NBS for SCD, and by 2006, all states, Puerto Rico, and the U.S. Virgin Islands required NBS.

Organizations like the Sickle Cell Disease Association of America (SCDAA), founded by Charles F. Whitten, have since played critical roles in supporting families. The SCDAA and its local chapters partner with caregivers, patients, researchers, and faith-based organizations to raise awareness, advocate for policies, host blood drives, and provide resources for individuals living with SCD.

The Ongoing Battle Against Health Inequities

Despite advancements, individuals with SCD face systemic inequities in healthcare. Adults with SCD are frequently stigmatized as drug seekers when seeking relief from severe pain, leading to delays in treatment and emotional trauma. My son, for example, was once escorted out of an emergency room after questioning a physician’s orders — a situation rooted in bias rather than medical necessity.

A shortage of medical professionals specializing in SCD further complicates care. Many hematologists focus on conditions like blood cancers, leaving SCD patients with limited access to experts. When my daughter was hospitalized in 2023 with RSV and the flu, her care team’s lack of expertise exacerbated her condition, prolonging her hospital stay and intensifying her pain.

The limited treatment options for SCD add another layer of complexity. While penicillin prophylaxis and Hydroxyurea remain standard therapies, newer medications like Oxbryta have faced setbacks, including recalls due to adverse effects. Curative options, such as bone marrow transplants and gene therapies, offer hope but are costly, risky, and come with significant trade-offs, including infertility and potential disease recurrence. Mental health and financial support for families navigating these treatments are sorely lacking.

Building Community Through Advocacy

Faith communities, particularly the Seventh-day Adventist (SDA) Church, have a unique opportunity to address the needs of the SCD community. By partnering with organizations like the SCDAA and local community-based groups, SDA churches can become hubs of support.

Key initiatives include hosting blood drives, offering sickle cell trait screenings, and creating spaces for support groups. Educational campaigns to raise awareness during World Sickle Cell Day in June or Sickle Cell Awareness Month in September can further destigmatize SCD and SCT within congregations and communities.

The church can also play a vital role in advocacy. Members can support federal, state, and local policies by participating in events like Sickle Cell Advocacy Day or writing to elected officials to demand better funding for research, treatment access, and workforce development.

A Call to Action

Sickle cell disease disproportionately affects the black community, with approximately 1 in 365 black or African American babies born with SCD and 1 in 13 carrying the trait. While the disease is rooted in areas where malaria is prevalent rather than race, the inequities in treatment and support highlight the need for intentional advocacy and systemic change.

Faith communities, advocates, and policymakers must work together to ensure that individuals living with SCD have access to equitable care and resources. By addressing these challenges and honoring the resilience of those affected, we can move closer to a future where sickle cell disease no longer defines the lives of those it touches.

FRANCINE BAKER, M.Sc., is a public health scientist, researcher, and patient advocate who honed her voice speaking up for two of her adult children who have Sickle Cell Disease.