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Nelson's daughter, Lindsey, 22, and a fourth year nursing student at New York University, said she was traumatized when, even before testing, Nelson talked about exploring assisted suicide rather than suffer her mother’s fate. The tests also showed that each of Nelson's three adult daughters had one copy of APOE4, which triples or quadruples the risk of developing the disease - confronting them with their own Alzheimer's risks along with their mother's.

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Nelson knew he had to have the disease, because of her genetic test results. When her father's memory began to fail a year later, one of her two sisters doubted it could be Alzheimer's, Nelson said. 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. "People describe feeling existential dread."Īs a scientist, Nelson understood intellectually what her APOE4 results meant, but they created emotional havoc for her family. "When you learn that information, you're potentially learning information about your siblings, about your children," said Emily Largent, a bioethicist and health policy expert at the University of Pennsylvania Perelman School of Medicine.

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Medicare has said it will expand coverage if the drug is granted full U.S. Alzheimer's patients and caregivers face a shortage of genetic counselors to explain the tests and help them navigate the psychological, medical, financial and legal consequences.Įisai and Biogen's Leqembi, which arrived on the market in January, costs $26,500 a year and is not covered by Medicare outside of clinical trials. Yet few support services are available to help people deal with the implications of APOE4 testing, according to interviews with more than a dozen neurologists and genetic counselors. 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. 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. Millions of Americans are expected to test for Alzheimer's in the coming years – some like Nelson, with at-home test kits, others at labs, as new drugs for people with early Alzheimer's from partners Eisai Co Ltd (4523.T) and Biogen Inc (BIIB.O) and Eli Lilly and Co (LLY.N) usher in sweeping change in approaches to treatment of the disease. Nelson has two copies of the APOE4 gene variant that increases the risk of Alzheimer's, which means her risk of developing the disease is eight to 12 times higher than people with the most common version of APOE. They delivered the worst possible result. Grief-stricken, terrified of facing the same death, Nelson ordered 23andMe (ME.O) DNA test kits for Christmas 2020 for herself and three adult daughters.Ī Boston-based biotech executive who is now 52, Nelson hoped the kits would provide reassurance. "All her pleasures of life were gone," Nelson said. CHICAGO, April 21 (Reuters) - Wendy Nelson watched her mother slowly die of Alzheimer's disease, unable to move or swallow at the end.











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