Sun, May 14, 2017 - Page 15 News List

Gene tests could send US insurers into death spiral

By Gina Kolata  /  NY Times News Service

Pat Reilly had good reason to worry about Alzheimer’s disease: Her mother had it and she saw firsthand the havoc it could wreak on a family, much of it financial.

So Reilly, 77, a retired social worker in Ann Arbor, Michigan, applied for a long-term care insurance policy. Wary of enrolling people at risk for dementia, the insurance company tested her memory three times before issuing the policy.

However, Reilly knew something the insurer did not: She has inherited the ApoE4 gene, which increases the lifetime risk of developing Alzheimer’s.

“I decided I’d best get long-term care insurance,” she said.

About 5.5 million people in the US have Alzheimer’s disease and they constitute half of all nursing home residents. Yet very few people in the country have been tested for the ApoE4 gene.

However, last month, with the approval of the US Food and Drug Administration, the gene testing company 23andMe began offering tests that reveal whether people have the variant, as well as assessing their risks for developing such conditions as Parkinson’s and celiac disease.

Other genetics companies are planning to offer similar tests and soon millions of people will have a better idea of what their medical futures might be. Research has found that many, like Reilly, are likely to begin preparing for the worst.

However, for companies selling long-term care insurance, the tests could be a disaster, sending risky patients in search of policies even as those with fewer risks shy away, damaging an already fragile business.

“There is a question about whether the industry is in a death spiral anyway,” Consumer Federation of America director of insurance Robert Hunter said. “This could make it worse.”

The tests are simple: All people have to do is send away a saliva sample and pay US$199. Their disease risks, if they say they want to know them, will be delivered with a report on ancestry and on how their genes influence such traits as flushing when they drink alcohol or having straight hair.

The company does not reveal how many people have received disease-risk data, but it says that in Britain and Canada, where it has offered such testing for several years, about three-quarters of their customers have asked for it.

23andMe has sold its genetic services to more than 2 million people worldwide since 2007.

The issue for now is with long-term care insurance, not employment and not — at least so far — health insurance.

Under the Genetic Information Nondiscrimination Privacy Act, companies cannot ask employees to take gene tests and cannot use any such results in employment decisions; insurers are not permitted to require gene tests or to use the results in coverage decisions.

However, legislation proposed in the US House of Representatives would exempt corporate “wellness” programs from some of these requirements and the American Health Care Act, passed by the House, would permit US states to waive some insurance safeguards regarding pre-existing conditions.

Companies selling long-term care insurance — unlike medical insurers — are permitted to ask about health status and take future health into consideration when deciding whom to insure and how much to charge.

The 23andMe test results do not appear in people’s medical records and the company promises not to disclose identifiable findings to third parties.

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