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The Current State

Currently, there are not enough health care providers with the comprehensive knowledge and expertise to care for people with SCD.

The unpredictable and often persistent nature of the pain and other complications associated with SCD poses a difficult challenge for providers, especially for those unfamiliar with treating people with this disease.

73% of family physicians believe that more education and support tools would help avoid complications in managing SCD.

69% of family physicians report that clinical decision support tools would be useful for treating SCD.

Only 20% of family physicians report feeling comfortable treating people with SCD.

Stepping Forward

Short-term goals:

  • Develop an actionable plan to educate health care providers about best practices in caring for those with SCD, including primary care providers and emergency department physicians.
  • Increase the number of providers who are able to care for those with SCD through training and certificate programs.
  • Augment pain management expertise through use of best practices and a thorough assessment of reversible conditions known to precipitate pain crises, such as dehydration and infection.
  • Develop clinical support tools to ensure quality of care for people with SCD.
  • Work with local stakeholders to develop standard-of-care guidelines that apply to specific, low-resource areas domestically.
  • Develop management guidelines to accommodate local capabilities.

Progress

In 2017, the American Society of Hematology announced the development of clinical guidelines to improve care for people with SCD. The Society will publish the guidelines in 2019.

Long-term goals:

  • Create incentives for training and retention in benign hematology.

Why it matters

The lack of available specialized providers (e.g., hematologists) plays a significant role in an over-reliance on emergency departments care for some individuals with SCD, especially adults.
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