Stop - misunderstanding and mismanagement of Sickle Cell Disease

The Issue

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.

avatar of the starter
Dominique and Michael FriendPetition StarterDominique Friend is an activist for Sickle Cell Disease awareness and research who currently resides in South Central Pennsylvania, but who grew up in Baltimore, Maryland and attended Baltimore City Public Schools. She is a wife, the mother of five wonderful children and has one beautiful granddaughter. Although her illness prevented her from graduating high school, she obtained her GED and then completed post-secondary courses in Creative Writing. Now a published author, Dominique has captured the essence of her daily struggles with the unpredictability and pain of Sickle Cell Disease in her autobiography, SICKLE, A Story of Pain, Purpose and Perseverance. Dominique’s story was written in another book entitled Uncommon Challenges; Shared Journeys.
This petition had 960 supporters

The Issue

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.

avatar of the starter
Dominique and Michael FriendPetition StarterDominique Friend is an activist for Sickle Cell Disease awareness and research who currently resides in South Central Pennsylvania, but who grew up in Baltimore, Maryland and attended Baltimore City Public Schools. She is a wife, the mother of five wonderful children and has one beautiful granddaughter. Although her illness prevented her from graduating high school, she obtained her GED and then completed post-secondary courses in Creative Writing. Now a published author, Dominique has captured the essence of her daily struggles with the unpredictability and pain of Sickle Cell Disease in her autobiography, SICKLE, A Story of Pain, Purpose and Perseverance. Dominique’s story was written in another book entitled Uncommon Challenges; Shared Journeys.

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The Decision Makers

American Medical Association
American Medical Association
CEO
Jenny Rosenberg
Jenny Rosenberg
Office of the Assistant Secretary for Health/Surgeon General
Roberta Baskin
Roberta Baskin
Office of Inspector General (OIG)
Office for Civil Rights (OCR)
Office for Civil Rights (OCR)
Rachel Seeger
Dominique Friend
Dominique Friend
SCD Advocate
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