Wednesday, July 29, 2009

Young Adult Cancer Bill of Rights

We are neither pediatrics nor geriatrics, we have unique needs- medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are equal and vital to all individuals.

We deserve to have our beliefs, privacy, and personal values respected.

Access to care is a right, not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.

2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.

3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.

4. The right to be informed about available clinical trials and given reasonable access to them.

5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.

6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.

7. The right to “generationally applicable” psychosocial support.

8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.

9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.

10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Preserve our potential.



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