Alzheimer’s advocates launch new non-profit to give patients and caregivers a voice

Leading U.S. Alzheimer’s advocates launched a new 501(c)4 organization this week titled Voices of Alzheimer’s. The aim of the organization is to amplify the policy priorities of those living with the condition and those most closely affected.

Voices of Alzheimer’s is uniquely led by those living with Alzheimer’s and other cognitive illnesses and their caretakers.

“Voices of Alzheimer’s work supports individuals in accessing innovations in diagnosis, care and treatment for the disease, said Jim Taylor, president of Voices of Alzheimer’s and current caregiver.

“Our organization is created by us for us to bring the patient-first voice, energy and passion to educating the government, healthcare and pharmaceutical industries, the media, private sector stakeholders and the public on the issues that matter most to people living with cognitive illnesses and their families and friends,” Taylor said.

Terrie Montgomery, a founding board member, also lives with Alzheimer’s.

“I may have Alzheimer’s, but Alzheimer’s will never have me,” Montgomery said. “I want to ensure that everyone who, like me, has received an Alzheimer’s diagnosis has the ability to make decisions about their own treatment and care.”

As its first policy priority, Voices of Alzheimer’s is looking at Medicare and the Centers for Medicare and Medicaid Services and its persistent refusal to cover FDA-approved diagnostics and treatments for Alzheimer’s.

“Over the last decade, Medicare has consistently discriminated against people with Alzheimer’s by refusing to broadly cover approved diagnostics and treatments,” Taylor said. “This leaves people with Alzheimer’s and their families to bear enormous personal costs and blocked us from life-saving treatments and care altogether.”

In addition to CMS, Voices of Alzheimer’s intends to promote advocacy surrounding three key objectives:

Fostering respect for the experiences of people living with Alzheimer’s and other cognitive illnesses.

Ensuring broad and equitable access to innovative treatments, diagnostics, and care services across the lifespan, including eliminating disparities in research, prevention, care, and treatment.

Promoting brain health, including the connection between brain health and healthy aging.

Learn more on the Voices of Alzheimer’s on their website.