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United to Conquer Sickle Cell Disease

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The Current State

Today, individuals with sickle cell disease are living longer, but the system of care needs to change to ensure a better quality of life.

As more people with SCD are living into adulthood, disease management needs to shift from acute care of complications to a chronic care model that focuses on prevention of crises, and intervention and relief for common complications. A coordinated health care delivery system for adults with SCD is a first step to improve health outcomes.

75% of adults with sickle cell disease fail to get the recommended treatment for their pain.

Health care costs an adult with sickle cell disease more than $30,000 per year on average.

The most promising drug for treatment, hydroxyurea, is not regularly prescribed.

Stepping Forward

Short-term goals:

  • Enhance knowledge of SCD among hematologists, primary care providers, ED physicians, mid-level providers, and palliative care specialists.
  • Use hub and spoke model or other approaches to improve geographic access to care.
  • Implement coordinated care models that incorporate community health workers, ensuring more equal quality of care regardless of where an individual with SCD receives care.
  • Fund more implementation research.
  • Identify essential health benefits for people with SCD enrolled in Medicaid.

    • More Goals

Progress

In 2017, Health Resources and Services Administration awarded Sickle Cell Disease Association of America an $11.6 million grant that will help to ensure those diagnosed with SCD receive appropriate follow-up services, including counseling, education materials, and access to a medical home.

Long-term goals:

  • Stabilize funding streams and sustainability of programs domestically.
  • Seek payment reform to support comprehensive management of pain and other long-term complications.
  • Support development and expansion of effective state strategies ("carve-outs") to enhance public insurance coverage and reimbursement.

Why it matters

Only one-third of children with SCD receive appropriate monitoring for stroke risk.
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The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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