Sickle Cell Information for Healthcare Providers

Photo: Children playing healthcare provider roles

This section of our website has tools and information about sickle cell disease (SCD) for health care providers, including free educational materials to give to patients.

Sickle Cell Disease: A Review
Read a review article about SCD complications and treatments.

Free Materials
View and print tip sheets to give patients and families.

SCD Course
Find a series of free, web-based videos designed to supplement education in benign hematology for fellows

Recommendations
Find clinical guidelines and recommendations for the management of SCD.

Data and Statistics
Find data and statistics related to SCD, including estimated prevalence, mortality, and economic costs.

Hemoglobinopathies Surveillance Activities
Find information on CDC’s current research project, the Sickle Cell Data Collection (SCDC) program, and a Transfusion Complications Monitoring project.

Articles
Read CDC’s latest scientific articles on SCD.

Links to Other Websites
Find more information and resources from other organizations on SCD.

Addressing Health Disparities and Racism: Real Steps Toward Change

Read action steps healthcare providers and health systems can take to get REAL with structural racism, interpersonal racism, and institutional racism.

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The following table was adapted from a speech given by CDC Director Dr. Rochelle P. Walensky at the American Society of Hematology’s Grassroots Network Lunch on December 11, 2021. Her remarks underscore CDC’s commitment to diversity, equity, and inclusion in health care and address the important role healthcare providers, hospitals, and health practices can play in addressing health disparities and racism as a threat to the nation’s health.

In her speech, Dr. Walensky suggests four actions that healthcare providers and health systems consider to tackle health disparities and racism:

  1. Recognize instances where structural or interpersonal racism exists in the healthcare setting and decide to take steps to combat it
  2. Educate yourself, colleagues, and the institutions you work with about the specialized needs of people with blood disorders, including how racism is a barrier to better health
  3. Advocate for your patients by representing their interests and sharing resources with them to access care
  4. Listen to your patients to better understand their needs and desires as you support them on their journey to better health

Read specific action steps in the table below that heathcare providers and health systems can take to get REAL with structural racism, interpersonal racism, and institutional racism.

Recognize

  • Use language appropriately and teach others to do the same, no longer using words like “sickler” or other demeaning terms to describe patients.
  • Practice mindfulness and self-reflection in the care of patients with sickle cell disease, recognizing that everyone has biases.
  • Address interpersonal racism by speaking explicitly about race within and across medical teams and creating safe spaces for all healthcare workers to discuss race and racism and to report events when they happen.
  • Reflect on how racism manifests in research settings, analyzing the effect of race and racism on funding for disease research.

Educate

  • Implement mandatory racial implicit bias training for all clinicians … in a supportive environment.
  • Pursue training programs to increase knowledge and competence about the use of evidence-based guidelines for the treatment of sickle cell disease.
  • Conduct research and surveillance to learn about risk factors in populations that have been traditionally underrepresented in research studies.

Advocate

  • Provide psychosocial support for patients, including the services of social workers, patient navigators, psychologists, and community health workers.
  • Develop formal, hospital-based reporting systems, similar to those for safety events and quality improvement, to document and respond to racist behavior.
  • Include patients with sickle cell disease, or their advocates, on antiracism task forces.
  • Institute sickle cell disease-specific pain-management protocols to reduce the time to opiate administration and to improve health outcomes.
  • Provide the means for patients with sickle cell disease to safely report concerns about racism or inequity.
  • Offer patients information about and access to clinical trials, when appropriate, during the course of that patient’s treatment. A lack of diversity in clinical trials leads to health inequities in medical research and, ultimately, practice.

Listen

  • Develop partnerships with patients and recognize their ability to educate providers about the impact of race and racism on their healthcare experiences.
  • Treat all patients with respect and dignity …. meeting their needs through accurate diagnosis … with providers listening to patients and understanding that risk factors may vary by race.
  • Listen to understand the lived experience of marginalized and minority populations and engage in active partnership with communities of color, being aware of cultural sensitivities.