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Genetic Tests Reveal Role for Preventive Care, but Insurance Doesn't Always Cover

HUNTSVILLE, Alabama (GenomeWeb) – Genetic and genomic testing can reveal diseases that people are at risk of developing, but insurance companies in the US don't always cover preventive care, according to a speaker at the Genomic Medicine conference held here by the HudsonAlpha Institute for Biotechnology.

Finding genetic risk provides information, but more than that is needed to prevent disease, Anya Prince from the University of North Carolina School of Law said. She added that cost could create a barrier to receiving preventive care, as insurance companies in the US fee-for-service system don't always cover it.

"Our insurance system is predicated on treatment rather than prevention," Prince said. However, she also noted that some provisions within the US Affordable Care Act are encouraging disease prevention.

A big driver in this lack of preventive care is Medicare, she said, as many insurance carriers look to it to guide their coverage. Since Medicare's core population is typically older and its mandate is to cover reasonable and necessary costs for the diagnosis or treatment of disease or injury, preventive care doesn't factor in. Medicaid coverage, she noted, varies by state, and although private insurers generally do cover more than Medicare and Medicaid do in terms of preventive care, it's still complicated.

All this, Prince said, can overlook patients for whom a genetic risk of disease suggests a role for preventive care to stave off disease.

"We're in this odd system," she said, adding that it is changing.

For instance, the Affordable Care Act requires that plans under its purview cover any preventive methods recommended by the US Preventive Services Task Force free of cost, with no copay or deductible. This does mean that BRCA testing for asymptomatic women at high risk due to a family history of disease must be covered by insurance plans, as USPSTF has recommended this.

The question, Prince said, is about what comes after testing. Preventive mammograms are available free of cost for women aged 50 and above, but she said it's hard for younger women who are at higher risk to get coverage. She also noted that there are no mandates to cover surgery.

In 2000, she said, 14 percent of insurance carriers had an explicit non-coverage policy for prophylactic surgery, while between 24 percent and 43 percent had an explicit coverage policy and the rest made the decision on a case-by-case basis. A more recent, post-ACA report from the National Women's Law Center and the Commonwealth Fund found that 16 out of 109 insurers excluded genetic testing — with the exception of BCRA testing — and 11 out of 109 excluded preventive services like prophylactic screening and surgery, Prince noted.

Prince argued that learning genetic risk of disease without access to prevention care can be harmful, and that it skews the original harm-to-benefit considerations and exacerbates health disparities.

To examine how extensive this lack of coverage is, she has launched a survey in conjunction with the Facing Our Risk of Cancer Empowered (FORCE) support and patient advocacy group to ask patients about their insurance coverage of genetic testing, genetic counseling, cancer screening, and preventive surgery. While the survey is to close later this month, the 880 responses they've had thus far indicates that many people do have some coverage, but that there are still some gaps. The respondents thus far largely have private insurance.

For instance, Prince noted that patients often need to appeal insurance company decisions in order to get that coverage. In an open-ended response, one person said that when her insurance changed, she had to call multiple times, escalate the call, and have her oncologist's office call to get coverage. Another person noted that each time her insurance changed, she had to again present evidence that though she was under 40, she was at high risk of disease, and a mammogram was warranted. Another respondent noted that Medicare only covered her prophylactic surgery because the surgeon found evidence of disease at that time.