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The Human Element

Voices of Alzheimer’s Launches Inaugural Bill of Rights

December 15, 2023

WASHINGTON, D.C. — The recently launched nonprofit organization Voices of Alzheimer’s, which is dedicated to advocating for the rights and well-being of people living with Alzheimer’s disease, has released a Bill of Rights for Alzheimer’s advocacy. According to a press release, The Bill of Rights was created in response to the growing challenges faced by the more than 6.7 million Americans living with Alzheimer’s disease.

A coalition of individuals directly affected by the condition, including those living with Alzheimer’s and their care partners, have collaboratively developed a Bill of Rights for People Living with Alzheimer’s Disease.

The Bill of Rights aims to address the ethical treatment and considerations that individuals with Alzheimer’s rightfully deserve by articulating the following key principles:

1. Dignity and Respect: All individuals living with Alzheimer’s have the right to be treated with dignity and respect, recognizing that their diagnosis does not diminish their inherent value.

2. Freedom from Discrimination: Advocating against discrimination, the Bill of Rights calls for equal treatment under the law and protection from employment, housing, and healthcare discrimination.

3. Prompt Diagnosis and Treatment: Emphasizing the critical role of early diagnosis, the initiative stresses the right to prompt access to FDA-approved treatments effective in the early stages of Alzheimer’s.

4. Annual Cognitive Screenings: The Bill of Rights advocates for the right to annual cognitive screenings, utilizing the most effective tools to detect and diagnose Alzheimer’s in its earliest stages.

5. Affordable Medicare Coverage: Individuals with Alzheimer’s demand affordable and expedient Medicare and other insurer coverage for screening, diagnostics, and treatment options approved by the FDA.

6. Equal Access for Younger Onset Alzheimer’s: Acknowledging the unique challenges faced by those with Younger Onset Alzheimer’s, the Bill of Rights asserts the right to immediate access to treatments, without waiting periods.

7. Participation in Clinical Trials: Encouraging participation in clinical trials without unnecessary barriers, the initiative calls for rigorous testing in diverse populations to ensure safety and efficacy.

8. Complete Information and Shared Decision-Making: The Bill of Rights affirms the right to receive complete information about diagnosis, treatment, prognosis, and inclusion in decisions about care to the fullest extent possible.

9. Continuity in Care: Emphasizing that diagnosis is just the beginning, the initiative asserts the right to continuous, high-quality care and treatment for non-Alzheimer’s health issues across all stages of the disease.

10. Quality Care in All Medical Settings: The Bill of Rights advocates for quality care in all medical settings, emphasizing the need for all health professionals being trained in interacting with and caring for individuals with cognitive impairment.

Recognizing the dynamic landscape of Alzheimer’s research and care, the coalition anticipates revising the Bill of Rights as needed to ensure the best possible quality of life for those living with Alzheimer’s.

Voices of Alzheimer’s mission is to empower people living with or at risk of Alzheimer’s and other cognitive illnesses, united by urgency, to drive equitable access to innovation in treatment and care. They are guided and led by those affected by Alzheimer’s, but with a broad membership including those individuals in the generation at risk. Their primary focus is to draw attention to the unmet medical needs of people with Alzheimer’s — especially to ensuring the FDA and CMS get meritorious products approved and into the hands of patients.

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