Sickle Cell disease (SCD) affects approximately 100,000 Americans and is the most common inherited blood disorder in the United States. SCD occurs in about 1 out of every 16,300 Hispanic-American births. Nearly 1 in 13 Black or African-American babies are born with sickle cell trait (SCT).
I also witnessed how resilient and strong kids can be in the face of this illness and endure pain that is often invisible to others.
Last month the Centers for Disease Control and Prevention launched the Stories of Sickle Cell project. This work shares the challenges and triumphs of people living with sickle cell in their own words. I was honored to participate in this effort to raise awareness about sickle cell and to shine a light on the diverse experiences and perspectives of people living with this disease.
In my role as chief health equity officer for the CDC Foundation, I am always examining public health efforts and challenges through an equity lens.
My time caring for children with SCD and their families illustrated the structural barriers to high quality and equitable health care that exist in our society, including a lack of adequate investment in research around best practices for patients. For example, are they being given the appropriate prophylaxis against infections or receiving appropriate screening for stroke risk factors and other preventive measures?
Equity also means allocating financial, emotional and additional support to patients and families caring for someone who is ill, because when one family member is sick it impacts an entire family and perhaps even the community in which they live.
Over the last several decades efforts have been made at the federal level to address these challenges. In 1972, Congress passed the National Sickle Cell Disease Control Act, which included provisions for screening and counseling programs, education and research and resulted in the development of comprehensive sickle cell centers.
Nearly 30 years later, Congress passed the Sickle Cell Treatment Act to significantly expand specialized treatment programs. There are several pieces of legislation currently making their way through Congress, which aim to boost research funding and provide greater access to treatment, though the fate of these efforts is uncertain.
What is clear is that more can be done both by the government and through private-public partnerships and philanthropy to address these important gaps in equity. I encourage you to learn more about people living with this disease at the Stories of Sickle Cell photoblog.
This content was originally published here.