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Published January 28, 2014, 10:41 PM

Health insurers struggle with whether to pay for genetic tests

FARGO – Medical science has developed genetic tests for 2,000 diseases that are available for clinical use.

By: Patrick Springer, INFORUM

FARGO – Medical science has developed genetic tests for 2,000 diseases that are available for clinical use.

Some, such as prenatal screens to test for Down syndrome and other congenital disorders, have been in use for years.

But in many cases, experts said, limited scientific information is available to evaluate tests, and medical providers and payers are struggling with how to navigate an expanding field of medicine.

Health insurers often are the gatekeepers in deciding whether to pay for genetic tests. Early diagnosis and treatment can improve patients’ outcomes and be more cost-effective, but payers want scientific guidance.

“They’re struggling with this too, is my belief,” said Dr. Claire Neely, medical director of the Institute for Clinical Systems Improvement, a Minnesota group that advises member health systems and insurers.

“They want to do the right thing for their patients,” she said.

Sanford Health’s recently announced initiative to bring genetic medicine and counseling into the primary care setting, in combination with research and education, should generate useful information, Neely said.

“I would call it increasing genetic literacy in primary care,” she said. “I think that is an important piece.”

Experts, including those with the Centers for Disease Control and Prevention, say “valid and useful” tests are available for certain hereditary breast and ovarian cancer, as well as a hereditary form of colon cancer, two well-established examples.

But those tests are not widely used, partly because of limited research on how to get useful tests in the clinic, and others have only limited scientific information to evaluate their effectiveness, a CDC report concluded.

Test coverage

Blue Cross Blue Shield of North Dakota, the state’s largest private health insurer, will review Sanford’s novel expansion of genetic medicine and counseling into primary care.

“While genetic testing in the primary care sector is relatively new in medical treatment, BCBSND will continue to evaluate medical necessity and reimbursement methodology,” Dr. Eunah Fischer, the North Dakota Blues’ internal chief medical officer, said in a statement.

Fischer would not elaborate on the review in an interview, but described the process in the statement as “very fluid yet robust, in order to adapt to new treatment options and the ever-changing environment of medicine.”

Blue Cross Blue Shield of North Dakota reimburses for some genetic testing, including tests for certain inherited breast, ovarian and colon cancer as well as to see if women carry genes for cystic fibrosis.

The Sanford Health Plan, health insurance coverage offered by Sanford, also covers those tests, but is expanding its coverage, said Ruth Krystopolski, the executive vice president who administers the plan.

Tests that help doctors treat a condition are the most likely candidates for coverage, she said. Genetic testing can help diagnose diseases and also predict which medications or dosages will work best.

“Which I think in the end will help improve health outcomes of the people we screen but also help reduce the costs,” Krystopolski said. “This is just one more set of information to guide us.”

Cost effectiveness

If a patient’s family history shows evidence of elevated risk for breast cancer, for instance, it can be more cost effective to test for hereditary breast cancer, said Mary Ahrens, who heads genetic counseling at the University of Minnesota Medical Center, Fairview.

In a case like that, the test would cost about $400, much less than approximately $1,000 for an MRI scan, Ahrens said.

Monitoring a high-risk patient, and taking pre-emptive treatment, can cost less and be much better for the patient, she said.

Still, insurers must be persuaded by scientific evidence that the tests qualify as

“standard of care,” Ahrens said, adding, “They need to see a lot of data.”

Genetic tests often cost about $2,000, she said, but can cost more. The cost of sequencing a patient’s entire genome costs about $5,000.

Patients sometimes have difficulty qualifying for coverage of genetic testing when they have only limited information about their family history, said Jamison Beek, a genetic counselor for Sanford Health in Fargo.

“Some patients still elect to pay the out-of-pocket costs,” if insurance doesn’t pay, he said.

Even when medical science can’t offer a cure, some people opt for a test to see if they have the gene for a hereditary disease, such as Huntington’s, a progressive neurological disorder, said Dr. Eugene Hoyme, a medical geneticist and president of Sanford Research.

“Some patients like to know so they can prepare,” he said. “If they know they’re going to die at 50, they’ll live differently than if they’ll live to 80.”

Readers can reach Forum reporter Patrick Springer at (701) 241-5522