Angelina Jolie, seen here at the Academy Awards in February, announced… (Chris Pizzello / Associated…)
We applaud Times columnist Robin Abcarian for shining the light on the inequities in our healthcare system in response to Angelina Jolie’s recent announcement about her prophylactic mastectomy. When Jolie made her medical decision, she had at her disposal the resources to pay for the procedures and the best doctors; not everyone has the same ability.
At the Cancer Legal Resource Center (CLRC), our attorneys hear from individuals who experience great difficulty undergoing the same procedures as Jolie because they fear discrimination based on the results of genetic tests, and because their insurance won’t cover the care they need. Until these barriers are removed, many women of more modest means than an A-list actress will remain unable to take control of their medical decisions.
Thankfully, women can take several steps to have the BRCA test (which Jolie underwent to determine her genetic predisposition to breast cancer) and other preventive treatments. Abcarian notes the barriers to care for many women; her observations are on point, but we want to highlight some of the legal protections and procedures in place.
Undergoing genetic counseling, genetic testing, preventive surgery and more frequent screenings can be prohibitively expensive. Abcarian points out that BRCA testing may cost a woman more than $3,000 in some cases, a situation that will not change unless the U.S. Supreme Court decides to revoke the test manufacturer’s patent in a case under consideration.
The good news is that insurance companies are increasingly covering services such as BRCA testing, as genetics is converging with regular medical treatment. Under the federal healthcare reform law, certain insurance companies must cover genetic counseling and testing for BRCA at no additional cost to the patient. This provision is limited to private insurance policies established after March 23, 2010, and to women with certain risk factors. Those covered by plans created before that date are out of luck: They probably have to pay out of pocket to cover all or most of the test’s cost.
Women who want to undergo screenings or preventive surgery like Jolie need first to contact their insurance companies to see if their policies cover these services. Without insurance, very few of us can afford this treatment, so to women who are denied coverage, we advise: appeal, appeal, appeal.
Women who contacted the CLRC generally received positive results by arguing that the preventive procedures were medically necessary, a position their doctors supported in writing. Women in California who face repeated denials can appeal to the state’s Department of Managed Health Care, the Department of Insurance or the company’s contracted independent appeals group. In these cases, an independent group of experts reviews the case and makes a decision that is binding on the insurance company.
If an insurance company covers a mastectomy, whether preventive or to treat an already diagnosed cancer, it must also cover the costs of the reconstructive surgery, which Jolie also underwent. Women should be aware, however, that their choice in plastic surgeon will be limited by their insurance network. In rare cases, women may be able to go out of network if they can demonstrate medical necessity.
Public programs can also help. Through Medi-Cal and Medicare, some women can get BRCA testing, but only if they meet very explicit family history guidelines. Preventive surgeries are much more difficult to get covered: Medicare won’t cover them at all, and getting Medi-Cal to pay for a procedure often requires a long fight. But if a woman and her doctor think this is the best route, this is a battle worth fighting.
Concerns about genetic discrimination can also be a barrier to BRCA testing. Some women worry that they or their children will be uninsurable if the results show they are likely to get cancer. Fortunately, the laws in this area are catching up. Increased protections such as the Genetic Information Nondiscrimination Act (GINA) and Cal-GINA in California have helped to shield individuals from insurance and employment discrimination and to protect people's privacy.
Legal and insurance barriers should not prevent a woman from being able to make her own medical decisions. As Abcarian so aptly noted, these lingering barriers must be lifted. Women can overcome many of them by appealing any denied claims and fighting back against genetic discrimination. Ultimately, like Jolie, many more people will be able to say, "This was 'My Medical Choice.' "
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The Cancer Legal Resource Center is a joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. Anya Prince is a genetic rights staff attorney at the CLRC. Jen Flory is director of the CLRC. For more information visit www.CancerLegalResourceCenter.org.
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