Insurers Question Health Benefits Of Some Genetic Tests

The day when a simple blood test or saliva sample can identify your risk for medical conditions ranging from cancer to Alzheimer鈥檚 disease seems tantalizingly close. But while advances in genetic testing increasingly give people critical information that may help prevent disease, genetics experts say sometimes the hype around these tests has outstripped the science. Insurers, meanwhile, generally only cover tests if there鈥檚 strong scientific evidence that it can provide a health benefit to patients.

听鈥淭he utility of some tests is not as clear as we鈥檇 like to think,鈥 says Sharon Terry, president and CEO of the , an advocacy organization aimed at promoting health through genetics. 鈥淭hese technologies are advancing at a really rapid rate, and they鈥檒l make a big impact on health. But the data gathering you need to do to determine clinical utility is difficult.鈥

Insurers Question Health Benefits Of Some Genetic Tests

Insurers don鈥檛 cover a $99 genetic test sold directly to consumers by听 that provides information about more than 240 genetic health conditions and traits that the company says can help people understand their health risks and carrier status for inherited disease, among other things. In November, the because the agency concluded it was a medical device and subject to FDA review and approval, which it hadn鈥檛 received. In early December, while it undergoes federal review.

Insurers commonly cover many diagnostic genetic tests that are ordered by doctors, for example, tests to look for rare diseases like cystic fibrosis in infants or children. Insurers will typically also cover preventive genetic tests if the patient meets criteria based on family history or other risk factors, and if there鈥檚 an effective test with proven clinical benefit that鈥檚 recommended by a standard-setting organization like the U.S. Preventive Services Task Force.

In such cases, insurers also typically cover genetic counseling to听first听collect someone鈥檚 family and personal history to determine whether听that patient听is a candidate for a particular genetic test, and then help patients understand their results, says Rebecca Nagy, president of the National Society of Genetic Counselors.

Coverage is generally routine, but in recent years some health plans have begun paying a declining percentage of the cost of testing, says Nagy. 鈥淐ompanies that were covering a test at 90 percent are now covering it at 80 percent,鈥 she says. . A听genetic test for the BRCA mutations, for example, may cost $3,000 or more.听

Under the Affordable Care Act, t to women whose family history indicates they have a higher than average risk of having mutations in the BRCA1 or BRCA2 genes that predispose women to breast and ovarian cancers. The ACA prevention coverage requirements are , which doesn鈥檛 recommend other preventive genetic tests.

Women frequently request genetic testing for breast cancer mutations because they believe their risk is higher than it is, say experts. This is particularly true since the actress Angelina Jolie disclosed that she had a double prophylactic mastectomy to guard against breast cancer after learning she has a mutation in the BRCA1 gene.听But if a woman鈥檚 only family history听of the illness听is one relative who developed breast cancer at age 65, for example, that,听by itself,听doesn鈥檛 mean she鈥檚 at higher risk, says Nagy. With counseling, 鈥渕any times we can give them reassuring numbers.鈥

In September, health insurer 鈥渃ommonly ordered and commonly misunderstood鈥 genetic tests, says David Finley, the company鈥檚 national medical officer.

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Insurers Question Health Benefits Of Some Genetic Tests

The tests covered by the new requirement are those for the BRCA mutations for breast and ovarian cancers, colorectal cancer and , potentially fatal heart arrhythmias.

Doctors who order these tests don鈥檛 necessarily suggest patients receive genetic counseling, even though national organizations recommend it, says Finley.

鈥淔rom our perspective, the only way to make sure that patients are getting the information and taking the time that they need about these tests is to require that they see a genetic counselor,鈥 he says.

Like other insurers, Cigna typically doesn鈥檛 cover genetic tests that don鈥檛 provide clinical benefit to the patient. “You don’t test for testing’s sake,” says Susan Pisano, a spokesperson for America’s Health Insurance Plans, a trade group.

One of the tests insurers generally don鈥檛 cover identifies which of three versions of the . The APOE gene is associated with late-onset Alzheimer鈥檚 disease, and someone with two so-called 鈥渆4鈥 versions of the gene is at higher risk of developing the disease.

鈥淸The APOE test] is ordered fairly frequently, but we don鈥檛 pay for it,鈥 says Cigna鈥檚 Finley. 鈥淚t鈥檚 not enough for a test to be accurate and scientifically reliable, it has to benefit the patient. And with the APOE test I don鈥檛 think they鈥檝e met those standards.鈥

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