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Petitioning CEO American Medical Association and 14 others

Stop - misunderstanding and mismanagement of Sickle Cell Disease

Sickle Cell Disease(SCD) has been called an ‘invisible’ disease because its disabling effects often aren’t apparent from outward appearances.  As a consequence, SCD sufferers often encounter unintentional discrimination based on their handicap - while life activities are often limited by SCD, the typical symptoms of weakness and fatigue are often interpreted as a lack of effort or will rather than as a indication of the need for accommodation to the patients’ needs. SCD places stress on family members, who have to adapt to the limitations that the disease places on the affected individual, and have to cope with the unpredictability of the disease as it affects all aspects of their lives. SCD challenges communities, which often aren’t prepared to cope with the needs of theseindividuals; many people are unaware that the disease still has no cure and that the excruciating pain of acute episodes of the disease can be severely disabling. And the expenses of treatment - getting to and from medical appointments, copayment and coinsurance fees and deductibles, purchasing assistive devices - leaves many families scraping to meet ordinary household needs.

This petition was delivered to:
  • CEO
    American Medical Association
  • Journalist
    Jacque Reid
  • Program Director
  • President and CEO
    Paula Wilson
  • Office of the President
    Mark R. Chassin, M.D., M.P.P., M.P.H.
  • Joint Commission
    Anne Marie Benedicto
  • AMA
    Robert Mills
  • Sickle Cell Advocate
    Aisha A. Williams
  • Sickle Cell Advocate
    Kee' Doria L. Coleman
  • United States Assistant for Secretary of Health
    Howard Kyongju Koh
  • SCD Advocate
    Dominique Friend
  • Rachel Seeger
    Office for Civil Rights (OCR)
  • Office of Inspector General (OIG)
    Roberta Baskin
  • Office of the Assistant Secretary for Health/Surgeon General
    Jenny Rosenberg
  • Secretary of Health and Human Services
    Kathleen Sebelius

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