Funding disparity for sickle cell disease costly to Georgia

National health officials estimate that Georgia has one of the three largest populations in the United States for sickle cell disease.

An inherited blood disorder that affects red blood cells, the disease is both painful and potentially life-threatening.

Although a genetic malady, SCD is increasingly becoming a public health threat in states like Georgia that historically have large underserved populations.

Experts report that SCD is the most prevalent inherited genetic disorder in Georgia and yet the least funded.

Effective prevention strategies in recent years have included newborn screening programs, health education and genetic counseling.

Unfortunately, resources needed for follow-up counseling and education to families with newborns who have SCD or sickle cell trait are generally the first to get cut.

With the rising prevalence of SCD in Georgia among underserved populations, Georgia policy-makers will soon find themselves faced with making consequential decisions about funding sickle cell treatment centers and community-based organizations that educate and counsel patients and the general citizenry.

While persons with SCD are living longer due to advancements in medical treatments, doctors now must contend with how to treat patients who are presenting new and more advanced health challenges.

Moreover, while SCD has been historically marketed as a disease that only affects persons of identified African descent, the U.S. can no longer afford to limit its focus for the disease on this population.

Gone are the days when SCD, and related blood disorders, could be classified as diseases that just affected persons of identified African descent.

Like many health-focused nonprofit organizations in Georgia serving underserved populations, the Sickle Cell Foundation of Georgia Inc., and its partner, Grady Comprehensive Sickle Cell Clinic, struggle to maintain effective care for patients.

A recent 20 percent cut in state funding for sickle cell programs (versus an average 10 percent cut for other like health organizations funded by the state) has made continuing to provide these services very difficult.

This care includes not only disease detection and clinical care, but also proper education and counseling that empower patients and their families to be more active participants in the management of their care.

Educating and supporting patients and their families to become more aware and responsible for timely care of health conditions strengthens the fiscal and clinical condition of hospitals and clinics.

Cuts to organizations and clinics that make this possible not only cripples individual patients and families, but also widens already gaping health disparities among these underserved populations.

Estelle E. Archibold is director of development and programs for the Sickle Cell Foundation of Georgia, Inc.