Sickle Cell Disease (SCD) affects persons whose ancestors come from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, Central American and the Caribbean); Mediterranean countries such as Turkey, Greece, and Italy; India and Saudi Arabia. In the United States, 1 in 13 African American babies is born with Sickle Cell Trait (SCT) wherein 1 in 365 are born with Sickle Cell Disease.
The Awareness was designated by Congress to help place attention on the continued need for research and treatment of Sickle Cell Disease. Other than the United States, no other country has committed to increasing the knowledge base of the community and healthcare professionals alike with such fervor.
In Africa and Asia, more than 500 children die a day from undiagnosed Sickle Cell Anemia and its most severe complications of splenic sequestration or overwhelming pneumococcal sepsis. The deaths occur because the parents of these children have not been trained like the ones in the US to look for early signs of splenomegaly and fever. Additional measures in Africa look to develop improved methods to test children for Sickle Cell Anemia earlier in life such as when children are first being immunized, as early diagnosis improves their lifespan.
In Europe, a Hematology Coalition is pushing for a 3-point strategy that would provide support in spreading awareness and information on the severity of Sickle Cell Disease to policymakers, patients, the general public and healthcare professionals. The first mission focuses on funding for research and innovation in the diagnosis, treatment, and prevention of Sickle Cell Disease. Under Horizon Europe, Sickle Cell Disease falls under the category of ‘non-communicable and rare diseases’ that have been prioritized for research funding. The second mission is education of healthcare providers, patients, and the public.
Many misconceptions still remain about Sickle Cell Disease, such as the disease is an African based communicable disease that only affects African people. Other myths such as Sickle Cell Disease can skip a generation, and patients with Sickle Cell Disease are mentally challenged have been heard is European countries as well, because in previous years those countries have had so little contact with patients with Sickle Cell Disease. The final mission will be to provide tools for screening tests and follow up of patients. In the US, neonatal screening for Sickle Cell Anemia (Hgb SS) is mandatory in 50 states. The goal in the EU would be to develop a type of Sickle Cell curriculum for healthcare professionals to adequately track patients.
Europe has continued to place these health crisis issues at the feet of individuals who are campaigning for public office, as the government will have to assist with the funding and infrastructure to provide the critical newborn screenings and public education. The challenge in Europe will remain as the population is still changing at a rapid rate.
Reference:
- McGann MD, Patrick T. Time to Invest in Sickle Cell Anemia as a Global Health Priority. Pediatrics. June 2016. Vol 137. Issue 6.
- The Centers for Disease Control. www.cdc.gov
- European Hematology Association. www.ehaweb.org