In a statement released last December, the physicians group said it opposed such a restriction and warned that it limits patients’ access to care.
Insurers sometimes take a different view, although their rules vary. Two national insurers, UnitedHealthcare and Cigna, require women to receive counseling by a certified genetic counselor or other professional trained in cancer genetics before they will approve coverage for tests that look for mutations in two genes, BRCA1 and BRCA2, that increase the risk for breast, ovarian and other cancers.
UnitedHealthcare began requiring genetic counseling for BRCA tests in January. The insurer allows physicians to do the counseling themselves if they attest they’re qualified to do so, said Dr. Lee Newcomer, senior vice president for oncology and genetics.
Cigna made counseling a requirement in 2013 for BRCA and colorectal hereditary cancers and a heart condition called Long-QT. In July, the company expanded the list to include all hereditary cancers. Cigna generally requires physicians to get additional training in cancer genetics in order to meet its counseling requirement, said Dr. Jeffrey Hankoff, Cigna’s medical officer for clinical performance and quality.
BRCA mutations increase a woman’s risk of developing breast cancer by age 70 by between 45 and 65 percent. They account for 5 to 10 percent of all breast cancers. BRCA mutations raise women’s risk of ovarian and other cancers as well. There are other known genetic mutations that also increase a woman’s risk for breast and ovarian cancers, but they are less commonly tested for.
The U.S. Preventive Services Task Force, an independent panel of medical experts, recommends that women with a family history of breast, ovarian, fallopian tube or peritoneal cancer be screened to determine if they’re at increased risk for BRCA mutations and referred for genetic counseling and testing, if indicated.
Under the health law, women with insurance aren’t responsible for paying anything out of pocket for the testing and counseling recommended by the task force if it’s performed by in-network providers.
The health law coverage requirement didn’t drive Cigna’s BRCA genetic counseling decision, said Hankoff.
“We had concerns that people were having testing ordered that didn’t appear to need it and probably didn’t understand it,” Hankoff said. In addition, “Too often the wrong tests were being ordered.”
For example, a woman whose sister has been diagnosed with breast cancer and tested positive for a specific mutation doesn’t need a genetic test that looks for all hereditary breast cancer mutations, Hankoff said. She only needs to be tested for the specific mutation that her sister has.
Genetic counselors, meanwhile, try to walk a middle line in the debate. To become certified, people complete a master’s degree program that encompasses both classroom study and clinical training in genetics, ethics and the psychosocial aspects of helping families through diagnosis and the decision-making process, among other things. Certification by the American Board of Genetic Counseling is typically required in order to practice.
“There are a lot of complexities with genetic testing,” said Mary Freivogel, president-elect of the National Society of Genetic Counselors, who practices in the Denver area. “A lot of [OB-GYNs] don’t have the time or interest to do this well.”
With the number of genetic tests growing by leaps and bounds, meeting the demand for counseling can be a challenge, experts agree.
Physicians don’t necessarily get it right. For one thing, they often aren’t great at taking family histories, neglecting to gather information about the men in a family, for example, or factoring in close relatives who died at a young age, said Robert Smith, a cancer epidemiologist who is vice president for cancer screening at the American Cancer Society.
“Not everybody has a set of family members that allow for the elevated risk to be obvious,” Smith said. “There’s a lot to be said for having a specialist do it.”