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On the Path to Health Equity: Improving the Quality of Sickle Cell Disease Care


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On the Path to Health Equity: Improving the Quality of Sickle Cell Disease Care

September 22, 2016

By: Cara V. James, Ph.D., Director of the Office of Minority Health at the Centers for Medicare & Medicaid Services

September is National Sickle Cell Disease Awareness Month. In the United States, sickle cell disease is the most common inherited blood disorder, affecting approximately 100,000 people. While sickle cell disease impacts all racial and ethnic groups, a higher proportion of African Americans and Hispanics are diagnosed with the condition than Whites in the United States. Across the life span, patients with sickle cell disease experience frequent and unpredictable pain episodes, numerous hospitalizations, and other serious health problems such as infection, acute chest syndrome and stroke. The most recent data available shows that costs for hospital stays due to sickle cell disease complications were estimated at $488 million. Multiple medical advancements and health care interventions have transformed a once fatal childhood disease into a chronic condition.

The principal aim for CMS is better care, healthier people, and smarter spending. To help achieve this aim, the CMS Office of Minority Health ensures that the voices and needs of minority and underserved populations are present in the development, implementation, and evaluation of CMS programs and services. Through the passage of the Affordable Care Act, patients with sickle cell disease and other pre-existing conditions can no longer be denied insurance coverage and they have coverage for preventive services such as pneumonia and influenza vaccinations at no cost share, which are important for people living with sickle cell disease. Additionally, From Coverage to Care helps empower consumers to understand their coverage and how to access the care they need.

In addition to empowering consumers, the CMS Quality Improvement Organization Program has created Special Innovation Project awards focused on encouraging QIOs to address an array of quality improvement issues including acute pain management for sickle cell patients. CMS recognizes that more is needed to assist sickle cell patients, from accurately identifying their illness to educating emergency department staff on sickle cell disease while addressing the cultural stigmas often associated with the disease. Additionally, CMS released a Decision Memo this year stating that Stem Cell Transplantation for Sickle Cell Disease will be covered by Medicare for beneficiaries with severe, symptomatic sickle cell disease who participate in an approved prospective clinical study. These clinical studies will address whether stem cell transplants improve multiple health outcomes, including overall survival and quality of life among Medicare beneficiaries with sickle cell disease.

The CMS Office of Minority Health is committed to helping all CMS beneficiaries, including patients with sickle cell disease, achieve their highest level of health, and working towards the elimination of disparities in health care quality and access. To achieve this goal, it will take the support of partners from the federal to the community level to develop and implement innovative projects and activities aimed at improving outcomes for Medicare beneficiaries. We look forward to working with you to improve the quality of care and the quality of life for patients with sickle cell disease.


1 Steiner, CA and JL Miller. Sickle Cell Disease Patients in U.S. Hospitals, 2004. AHRQ Statistical Brief #21. 2006.