The Problem
Why We Exist
Individuals with Sickle Cell Disease (SCD) often face profound health challenges and socioeconomic disadvantages, leading to adverse outcomes affecting daily life and potential early mortality.
The high cost of SCD healthcare is a significant economic burden on those with SCD and their families, which poses financial challenges, especially considering that multiple family members might have SCD
Health care costs are primarily shouldered by patients and their insurers, but many Kenyan families lack health insurance, and SCD is often considered a pre-existing condition, limiting coverage options.
For young adults with SCD, transitioning from dependent status to adulthood brings insurance challenges, as they become ineligible for parental coverage. Uninsured individuals with SCD face higher financial burdens as the disease progresses with age.
Children with SCD experience poorer educational outcomes due to both the disease itself and socioeconomic factors. Frequent SCD episodes lead to school absences, affecting academic performance. Stroke complications can further impact intellectual capacity, potentially requiring grade repetition or special education services.
Securing and maintaining employment is crucial for adults with SCD, as studies show a positive correlation between employment and reduced healthcare interactions.
However, individuals with SCD encounter employment challenges due to educational setbacks and the time spent on seeking treatment, impacting their job prospects.
Securing and maintaining employment is crucial for adults with SCD, as studies show a positive correlation between employment and reduced healthcare interactions. However, individuals with SCD encounter employment challenges due to educational setbacks and the time spent on seeking treatment, impacting their job prospects.
SCD can result in diminished lifetime earnings for individuals and their caregivers. Premature mortality decreases lifetime earnings by approximately 40%, and family caregivers also suffer adverse effects on their employment and income due to caregiving responsibilities.
Societal factors associated with SCD such as stigma, racism, and lack of public awareness tend to increase the burden of SCD.
Education
On average, children with SCD have poorer educational outcomes than those without it whether due to the disease itself and/or the socioeconomic status of the children and their families. Children living with SCD will be absent from school due to frequent episodes of SCD. In one of the studies, it was found that one-third of the parents indicated that their child experienced “frequent school absences” of more than 20 days per year.
Stigma
Persons living with SCD routinely experience social isolation and a fear of disclosing their disease status because of the stigma associated with the disease. In some cases, children living with SCD perceive themselves to be a burden on their families as a result of stigma.
Lack of Public Awareness
Public awareness of SCD has increased in recent years though still significant gaps in knowledge persist. Most people in affected societies may have heard of SCD but there are not aware of SCD transmission nor their individual status.
OUR PARTNERS
The Joanne Chazima Sickle Cell Foundation (JCSCF) is a non-profit organization registered and based in Kenya whose primary goal is to raise awareness about sickle cell disease and provide access to healthcare services in disease-affected areas.