The Baltimore-based Sickle Cell Disease Association of America and those who have been affected by the illness, their family members and friends and others have collected more than 120,000 signatures on a White House petition to bring the disease some much needed attention.
It may also lead to legislation that will provide sorely needed funds and resources that could help combat the dreaded condition.
“The petition is currently under review at the White House and we are hopeful that positive change will be made,” said Kelsey McDowell, the communications specialist at the nonprofit Sickle Cell Disease Association of America (SCDAA). “Nevertheless, such success is contingent upon raising public awareness and support.”
Sickle cell disease is an inherited blood disorder that affects red blood cells. Individuals with sickle cell disease have red blood cells that contain mostly hemoglobin S, an abnormal type of hemoglobin, according to information from the SCDAA. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.
When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. There is currently no universal cure for sickle cell disease and more than 300,000 children are born with it each year, according to officials.
The petition, which was launched on September 22, 2014, was created by SCDAA President and Chief Operating Officer, Sonja Banks. It requests that President Barack Obama and his administration declare sickle disease a national health priority and that the White House support legislation to establish and expand sickle cell disease programs.
“This goal would not have been met if it weren’t for the dedication of our members as well as strong celebrity endorsement that include: Steve Harvey, Kier “Junior” Spates, Kevin Hart, Nick Cannon, Dondre Whitfield, Nelly, Jackie Long, Khloe Kardashian and Jourdan Dunn,” McDowell said.
The priority of the legislation, known as the Sickle Cell Treatment Reauthorization Act, is to improve quality of life, treatment and prevention for those affected by sickle cell disease, she said.
Among numerous modified benefits, the bill aims to establish full funding for 25 Sickle Cell treatment centers throughout the country and to provide continued support of a National Evaluation Center to collect, coordinate, monitor and distribute data, as well as to define best practice standards.
Common among African-Americans, Latinos and those whose ancestors are from sub-Saharan Africa, regions in the Western Hemisphere, Saudi Arabia, India and Mediterranean countries, sickle cell disease affects an estimated 100,000 Americans who live with the disease while about 3 million people— including one in 12 blacks— are carriers of sickle cell traits.
In Maryland, 40 percent of the population— or about two million individuals— fall within those demographics, according to McDowell.
Even though sickle cell disease-related healthcare costs average an estimated $2 billion annually, it receives a significantly disproportionate amount of funding for research and treatment compared to other blood disorders or comparable diseases.
“We are hopeful that this bill will not only improve the quality of care, but also the quality of life for sickle cell patients,” McDowell said. “As the only national resource for sickle cell disease, the SCDAA is proud of accomplishing the goal of 100,000 signatures, however, the hard work will not cease until change is made for the sickle cell community.”