BRCA Choices Not Affordable for Many US Women

Roxanne Nelson

May 23, 2013

In This Article

Expensive Process

The whole process of counseling, genetic testing, and any preventive actions taken as a result of testing is expensive.

For a start, the cost of the BRCA test alone is about $4000. Preventive surgery and more frequent screenings can be prohibitively expensive, even if a woman does have insurance. Especially with surgery, indirect costs, such as those associated with taking time off from work and childcare, also need to be figured into the equation.

But there is an upside to the story. Although genetic counseling, testing, and preventive options will continue to remain out of reach for many women in the foreseeable future, there are options, and the tide may slowly be shifting.

Many insurers will cover the cost of prophylactic mastectomies, according to Jen Flory, JD, "although it often takes filing both an internal and external appeal to get it."

"The BRCA testing itself should be covered by any plan started after March 23, 2010, as Health and Human Services has found this to be one of the mandatory free preventative care measures covered under the Affordable Care Act [ACA]," said Flory, who is director of the Cancer Legal Resource Center, Los Angeles, California. "Older insurance companies generally charge a co-pay or coinsurance for the test."

Schlager noted that in her experience, most major insurers will cover genetic counseling and testing, provided that the patient meets the guidelines set by the National Comprehensive Cancer Network (NCCN). "The guidelines are very specific...as far as personal history or family history. So if you don't meet them, you probably won't be covered," she added.

When it goes into full effect, the ACA will at minimum provide genetic counseling to certain persons and their families, she added, although there are some caveats. "Men do not qualify for BRCA testing under the ACA," Schlager said. "And Medicare will only cover it if you already have cancer."

The rationale for that, believes Schlager, is that genetic cancers tend to strike at a younger age, and Medicare is dealing with an older population. "But still, it would be good to be identified as a carrier, as that would be important information for the family," she said.

Medicaid coverage is also restrictive, and coverage of the test varies state by state, according to Flory. "Those that cover it generally have stringent risk factors and cover it on a once-in-a-lifetime basis."

Myriad Genetics, currently the only company offering testing for the BRCA gene, also offers free testing for low-income women and those without any insurance. They have very stringent eligibility criteria, Schlager pointed out, but it still is an option, and many women can get tested that way. As previously reported by Medscape Medical News, Myriad has been enmeshed for several years in a legal battle over its patent rights to the BRCA genes, and the case is currently being deliberated by the US Supreme Court. Oral arguments were heard on April 15, and a decision is expected this summer.

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