'It totally backfired': The pitfalls of Alzheimer's genetic testing

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'It totally backfired': The pitfalls of Alzheimer's genetic testing
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Millions of Americans are expected to test for Alzheimer’s disease – some with at-home DNA test kits, others at labs — as new drugs for early Alzheimer’s, from partners Eisai and Biogen and Eli Lilly, usher in sweeping changes in treatment

Testing for the APOE4 gene variant among Americans being treated for Alzheimer's has more than doubled from a year ago, an exclusive analysis of medical records for Reuters by health data firm Truveta found. The increase was driven by the new treatments that promise to slow the progression of the disease, but also carry risks, especially for people like Nelson carrying two copies of APOE4.

She had inherited one copy of APOE4 from her mother and the other from her father, who was showing no symptoms of Alzheimer's at the time. "I would yell at her, cover my ears and run away," Lindsey said. "There are many complicated emotions involved." Nelson is pinning her hopes on an experimental pill from Alzheon Inc, which is being tested in people with early Alzheimer's who have two copies of APOE4.

Both drugs remove the buildup in the brain of amyloid plaques associated with Alzheimer's, and are viewed as a first step towards even more effective treatments. Both can cause swelling and microbleeds in the brain. US regulators recommend genetic testing before starting treatment with Leqembi. The National Institutes of Health estimates up to 25% of people in the United States have one copy of APOE4 and up to 5% have two copies.

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