Liberia, an estimated 1,700 infants are born annually with sickle cell disease
(SCD). Presently, 50-90% of children with SCD in sub-Saharan Africa die prior
to their fifth birthday, without knowing that they have a manageable disease.
Although newborn screening programs worldwide have demonstrated success in
reducing morbidity and mortality attributable to SCD, there is no such program
in Liberia. Low-cost, high impact initiatives could significantly improve the
availability of health care and diagnostics for children and adults with SCD
through a multi-faceted effort.
2012, a successful pilot neonatal screening program was initiated at a hospital
in Monrovia. In one year, nearly 3,000 infants were screened for SCD. This pilot collected samples from eligible patients with a high rate of accrual,
processed samples at a regional reference laboratory, and referred affected
children to care. While this pilot has made a substantial impact at the
referral hospital, there is much more to be done.
The primary goal of
screening and clinical care program for sickle cell disease in Liberia will
be to systematically identify children with SCD in the newborn period and to
facilitate proper management of the disease from childhood through adulthood. This
program will be tailored to meet the needs of various health care communities
in Liberia, with the goal to have resources available in cities and in rural
areas. Through increasing the availability of health care, education about SCD,
advocating for the needs of patients, and increasing opportunities to
participate in research, this program will raise the standard of care for
patients with SCD. By uniting representatives from the community at large, the
sickle cell community, government, and the health care sector, we will combine
perspectives and resources to achieve our common goal. Ultimately, increasing
survival for all patients with SCD will enhance our understanding of the
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