source: Pfizer Rare Disease

year: 2018

Many have spoken out about the need for change in the quality of care for individuals with sickle cell disease (SCD). Despite all of the earlier and ongoing research activity, SCD continues to be a major, global public health crisis, and cause of early death and signifi cant disability. SCD is associated with multiple potentially life- and limb threatening complications, but vaso-occlusive crisis (VOC), resulting in acute, excruciating pain, is the most common clinical manifestation of SCD and reason for emergency department (ED) visits.

A VOC is defined as pain resulting from tissue ischemia caused by vaso-occlusion, most commonly in the bone(s) and bone marrow. Although national guidelines have been in place since 1999, acute care remains suboptimal. Therefore, there is a critical need to improve care for SCD patients in the United States.

This level of optimal care requires a comprehensive care network, including primary care providers and hematologists providing specialized SCD care. A myriad of issues prevent most individuals with SCD, particularly adults, from receiving the level of optimal care that they need.

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