On June 14, 2020 the Governor’s Sickle Cell Advisory Board submitted a letter to several Colorado state legislators. The letter highlighted the quality of sickle cell disease (SCD) treatment offered by the Colorado Sickle Cell Treatment and Research Cente (the Center,) Children’s Hospital Colorado and University of Colorado Hospital. This was in advance of World Sickle Cell Awareness Day (on June 19) and Sickle Cell Awareness Month in September.
What is sickle cell disease and how does it affect minorities?
The Center, established more than 40 years ago, and the associated pediatric and adult care clinics are the region's primary source of expertise and comprehensive specialty care for both children and adults living with sickle cell hemoglobinopathies, or abnormally shaped hemoglobin, which is the protein in red blood cells that carries oxygen.
SCD is the most common inherited blood disorder. The name originated from the nature of these hemoglobin abnormalities. Patients with SCD have red blood cells that look like sickles, which are crescent-shaped tools used in farming. In children with SCD, these crescent-shaped red blood cells break easily and don’t deliver as much oxygen as the body needs. As a result, these cells cause pain, anemia, stroke, respiratory and other serious complications.
SCD occurs most commonly in persons of African, Mediterranean, Middle Eastern, Indian, Caribbean and Central and South American ancestry. One in every 400 Black infants has SCD, with approximately 2,000 affected infants born in the United States each year.
“Phenomenal” and comprehensive sickle cell disease care
The Governor's Board letter praised the Center for “the importance of the work they do and the dedication of the staff,” which “have been phenomenal in providing comprehensive care to patients and education to other healthcare providers treating children and adults with sickle cell disease.”
The letter went on to highlight the vital role the Center plays in addressing health disparities:
“Systemic issues in access to quality care, structural racism and health inequities continue to be a challenge in our healthcare system, and persons with SCD are at a heightened risk because their bodies are immunocompromised. Many individuals living with SCD are unable to access quality care and are limited by a lack of effective treatment options. The Center does its best to bridge this gap and provide quality care and resources to individuals, their families, caregivers and providers.”
Helping address systemic health inequalities
“We are extremely honored to have been recognized by Gov. Polis’ Sickle Cell Advisory Board for Children’s Colorado’s role in treating sickle cell disease,” said Rachelle Nuss, MD, Associate Director of the Center and Director of the pediatric hemoglobinopathy program at Children's Colorado. “Most of our Center’s patients are Black or African American (85%) or Latinx (10%), which are two populations we know struggle with systemic health inequities. Children’s Colorado is committed to ensuring the best care is available to all patients and to eliminating disparities in healthcare.”
With a vision of advancing the health, education and support of those affected by SCD, the Governor’s Sickle Cell Advisory Board was created to oversee the operations of the Colorado Sickle Cell Treatment and Research Center, which was mandated by legislative action in 1974. Board members are appointed to four-year terms by the Governor of the State of Colorado.