Fortunately, Angelina Jolie Isn't On Medicare

Most large private payers cover testing for a genetic marker indicating inherited breast cancer risk and will pay for prophylactic surgery. But Medicare has no national coverage decision for the test or for preventive mastectomy.

Last week 37-year-old Angelina Jolie, the actress, film director, and activist, kicked interest in genetic testing into overdrive when she announced that based on testing and her history of cancer, she had undergone a preventive double mastectomy.

A blood test showed that Jolie carries an inherited genetic mutation known as BRCA1, which increases her risk of developing breast and ovarian cancer. In a New York Times op-ed piece, Jolie wrote that the death of her mother at age 56 after a 10-year battle with cancer, combined with the BRCA results put her at an 87% risk of breast cancer and a 50% risk of ovarian cancer.

With the surgery she says her breast cancer risk factor is now less than 5%. She has opted to start with breast surgery, "as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex."  

Among my first thoughts after reading Jolie's column was how fortunate the mega-star was to be able to self-fund the testing as well as the procedure. A spate of news articles grumbled that BRCA testing, which carries a $3,000 price tag, is not typically covered by insurers.

A 2011 study of the public and private coverage policies for BRCA testing published by the National Center for Biotechnology Information, however, offers some evidence to the contrary: Private payers are doing a pretty good job of providing coverage.

Even signing up for a Medicare Advantage plan from a private payer could be an option for Medicare-eligible women to gain BRCA coverage. Many commercial insurers apply their BRCA and prophylactic mastectomy criteria to their Medicare Advantage plans as well despite the lack of a definitive CMS policy.

The weak link is Medicare.

As for large private payers, most not only cover BRCA and prophylactic mastectomies, they are explicit about their coverage criteria. (A word of caution: Just because coverage is offered by payers does not mean that every employer will elect to include it.)

Aetna's approach is typical. A 23-page clinical policy bulletin details the high-risk indicators that must be met to deem that testing, and then the procedure itself are medically necessary.

To develop their coverage criteria, insurers have turned to guidelines from the American College of Obstetricians and Gynecologists, the American College of Medical Genetics, and the U.S. Preventive Services Task Force among other groups and organizations. Among the high-risk indicators:

• Women diagnosed with breast cancer at 45 years of age or younger
• Two members of family diagnosed with breast cancer under age 50 or ovarian cancer at any age
• Close male blood relative with breast cancer
• Women without a personal history of breast cancer with three or more close blood relatives on the same side of the family with breast cancer.

The Medicare Way
While the guidelines under private coverage may be solid, the same can not be said of Medicare or Medicaid.

Medicare does not have a local or national coverage decision for BRCA testing and instead relies on a patchwork of policies that may be implemented at the discretion of local contractors, according to a spokesperson for the Centers for Medicare & Medicaid Services. I was told, "…as for BRCA tests, they really are not local options for screening. Local contractors may cover them for diagnosis or to guide treatment only." 

The prophylactic mastectomy is classified as a preventive surgery and is "generally not covered whether at the local or national level," the CMS spokesperson explained.

But isn't healthcare reform supposed to be largely about prevention? The Patient Protection and Affordable Care Act includes a list of preventive services that it expects private insurers to cover without a co-pay or deductible. According to FORCE, an advocacy group for cancer patients, HHS has clarified that genetic counseling for inherited breast and ovarian cancer risk and BRCA testing fall under this policy.

Granted, the PPACA applies to private insurers and not to Medicare, but the clarification seems to confirm the importance of BRCA testing. Still, CMS tells me that the agency is not contemplating a national coverage decision for BRCA tests for screening or mastectomies for prevention.

Medicaid coverage of BRCA screening and counseling is a hodgepodge of state policies. A 2012 report from the Kaiser Family Foundation concluded that BRCA is not typically covered [PDF]. It identifies 24 states, including Indiana and New York that cover both screening and counseling; 18 states cover one service or the other; 14 states charge copays for one or both of these services. Six states, including Florida, Alabama, and Louisiana, cover neither service.

Grace Wang, PhD, senior researcher with the American Institutes for Research and an author of the NCBI study, says Medicare tends to be conservative around policies on preventive service and perhaps with good reason. "National coverage decisions receive a lot of scrutiny and criticism. There isn't much flexibility to change once a decision is made."

Still, Medicare's lack of consistent and explicit guidelines for BRCA means a patient's geographic location may play more of a role in approval for testing than the need for that testing. "The requirements can be very narrow is some areas," notes Wang.

Through her work in film, as a Goodwill Ambassador for the UN High Commissioner for Refugees, and as an adoptive parent, Angelina Jolie has lived and worked all over the globe. She's even written a book called Notes from My Travels: Visits with Refugees in Africa, Cambodia, Pakistan and Ecuador.

If she were dependent on Medicare to pay for her healthcare, Jolie would likely not have been in a position to write these words in the New York Times: "I feel empowered that I made a strong choice… Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of."