Alzheimer’s advocates move one step closer to research diversity

A Hawaii resident is sharing her mother’s story of living with Alzheimer’s to push for the ENACT Act.
Published: Jun. 16, 2022 at 9:32 AM EDT
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WASHINGTON (Gray DC) - “Alzheimer’s disease affects everybody, not just white people.” Alzheimer’s advocate, Amy Truong, said. She knows that firsthand. Her mother, an Asian American, was diagnosed with early onset Alzheimer’s 14 years ago.

Truong started volunteering with the Alzheimer’s Association, and noticed she was one of just a few non-white advocates. She explained that diversity is also lacking in Alzheimer’s studies.

“For Native Hawaiians, for Asian Americans, and for Native Americans, there’s actually not enough data at all to even come to a conclusion,” Truong said.

Truong is taking her concerns to Washington: she’s meeting with lawmakers from her state of Hawaii about the ENACT Act. If passed, the bill would require increased participation of underrepresented populations in research and clinical trials for Alzheimer’s and related dementias.

Sen. Ben Ray Lujan (D-N.M) co-sponsored the legislation, which has broad bipartisan support.

“Alzheimer’s doesn’t care how you’ve registered to vote,” Lujan said. “This is an issue affecting all of America.”

Dr. Christina Prather from George Washington University’s Institute for Brain Health and Dementia believes expanding these studies can help medical professionals improve diagnoses for minority patients.

“When we are better able to engage with people who are traditionally underrepresented, it means earlier connection to care and services,” said Dr. Prather.

Sen. Lujan said he does not know yet when the bill might see a vote, but hopes to attach it to the next package of health legislation moving through Congress.

Multimedia journalist Natalie Grim contributed to this report.

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