Why We Exist
- The Sickle Cell Gap
- Challenges
- FEAR AND DISTRUST: Lack of trust of the medical systems
- Knowing the ROOT of the problem is the KEY...
The Sickle Cell Gap
There is a real gap of resources, support systems, educational and informational systems due to the lack of AWARENESS. We are in dire need of more support services, programs and most of all FUNDING in this fight for a cure.
Our families are suffering physically, emotionally and financially due to this disease, and we will continue to suffer, until we make some necessary changes.
The disparity with the growth of the Sickle Cell community and the lack of support organizations in metro-Atlanta and across the country is overwhelming!
The National Sickle Cell Anemia Control Act, passed in 1972, increased funding for Sickle Cell Disease, primarily for the development of comprehensive Sickle Cell centers.
The passage of the Sickle Cell Treatment Act in October 2004 was designed to expand specialized Sickle Cell treatment programs, offering a remarkable opportunity to significantly improve health outcomes for those who suffer with Sickle Cell Disease.
Gaps exist in the equity of research funding allocation, private philanthropy and in the provision of high-quality clinical care, despite major advances in treatment.
There is a substantial difference in the research effort for sickle cell anemia compared with other chronic childhood diseases, measured by the number of National Institutes of Health (NIH) grants.
There were 3 times as many grants for the more highly publicized conditions of cystic fibrosis and muscular dystrophy as there were for Sickle Cell Disease.
Sickle Cell Disease received less public and professional support compared with other less prevalent diseases, such as cystic fibrosis, despite having a substantial public health impact.
Despite major advances in Sickle Cell Disease treatment that have occurred over the past 3 decades, gaps exist both in the equity of government and private philanthropic support for research and in the realm of Sickle Cell organizations, most of which dissolve due to lack of financial support and failure to thrive.
Challenges
- Lack of awareness of Sickle Cell risk among the target population. (those who carry the trait)
- Lack of effective education, counseling and support services.
- Lack of effective communications with Medical Professionals.
- Fear, distrust and discrimination between the medical community and African Americans.
FEAR AND DISTRUST: Lack of trust of the medical systems
Stigmas and discrimination due to misinformation and improper education on the part of medical professionals and the Sickle Cell community at large have been one of the main problems that have hindered the trust in the African-American community. Among the confusion and misinformation, a great suspicion arose in the African-American community that the sickle cell policy was another instrument of genocide. Fear has been passed down and engraved into African-Americans' mental DNA.
- Racial disconnect, bias, and discrimination.
- Tuskegee experiments.
- During slavery, white doctors would prematurely declare blacks dead in order to harvest their organs and conduct experiments.
The question of race has been inextricably linked with Sickle Cell Disease since its recognition as a distinct genetic disease. Although it is uncomfortable to contemplate, we know that racial bias adversely affects the availability of resources not only for research and the delivery of care, but also for the improvement of that care.
Sickle Cell Disease is largely absent from discussions of disparities precisely because it predominantly affects patients of one race; hence, there are no racial differences in care or outcome within the condition. However, the focus on differences obscures important considerations of differences in outcomes between conditions that may disproportionately affect different sectors of the population.
While blacks represented about 12 percent of the U.S. population, they represented only about 3 percent of organ and blood donors.
This is terrible news for African-Americans in need of an organ or bone-marrow transplant, or blood transfusions - which are much more likely to make a genetic match with another African-American donor.
Knowing the ROOT of the problem is the KEY...
Addressing the root is the GOAL
If it is explicitly funded, equity and quality in Sickle Cell Disease care will guarantee support in the research for a cure.
One of the FACE Foundation's solutions to the disparities will be the pulling together of a coalition of Sickle Cell support organizations, working with the medical professionals, to serve as a model for collecting and disseminating data on clinical care and outcomes.
It is the hope of the FACE Foundation, Inc to work tirelessly together against this disease, and in all areas, to fight the trials and tribulations of exclusion, and loosen the grip of prejudice and discrimination, which often punishes our Sickle Cell community, as a whole.
This is not the fight of a single race, or even a single organization. It is the fight of women, men, and young people with great heart, courage and determination. It is our greatest responsibility today as parents, caregivers and adults who suffer with sickle cell disease, and the community as a whole.
We would like to give our children the chance to see all their greatest hopes and dreams become a reality in this country, where anything is possible.
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