Nearly two years after writing a New York Times op-ed about her preventative double mastectomy, Angelina Jolie Pitt returned to the same page to describe her decision to have her ovaries and fallopian tubes removed. Both procedures resulted from testing positive for a gene that raises her risk of cancer and were done in hopes of lowering her risk of developing the disease.
Both pieces have the same dispassionate, transparent approach; both have the stated aim of helping “other women at risk to know about the options.” But not all women who find themselves in Jolie Pitt’s position are international superstars. However, there’s some good news for those women, too: Thanks to the Affordable Care Act (ACA) and the Supreme Court, they have more protection and better options than they did when Jolie Pitt’s first piece appeared. Here’s what’s changed — and what still needs to change.
Genetic testing is more accessible. “The truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer,” the actress and director wrote in 2013, before taking her married name. But, she noted at the time, “the cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.” If a woman didn’t have insurance coverage, they were stuck with the full price tag, and the reason the test was so expensive in the first place was that Myriad Genetics held the patent on the gene. But one month after Jolie Pitt’s first op-ed, the Supreme Court ruled that Myriad Genetics couldn’t patent a gene, and this past January, Myriad gave up on suing other companies that were making cheaper tests. (The company had argued they were infringing patents not covered by the Supreme Court case.)
It’s also become much easier for affected people to get insurance coverage since, thanks to the ACA, insurance companies are no longer allowed to discriminate against patients based on their medical history. “It’s made it so that the people who get cancer aren’t dropped like a hot potato,” said Lisa Schlager, vice president for community affairs and public policy at FORCE: Facing Our Risk of Cancer Empowered, a group that advocates for people with hereditary breast and ovarian cancer.
If a patient qualifies, the insurance company has to cover the genetic tests as preventative care, without any additional cost to the patient. But the guidelines under the ACA, said Schlager, “are not as comprehensive as we would like. They only address women who have not had cancer.” Once a woman has had cancer, the reasoning goes, the test no longer qualifies as preventative care. But some women with past cancer diagnoses may not have been tested and are separately at risk for other cancers based on their gene mutations. The preventative care guidelines also don’t cover the genetic testing for men, even though men who carry BRCA1 are at risk for prostate cancer and men who carry BRCA2 are at risk for breast cancer. And Medicare has the opposite policy from the ACA: It only covers the test for people who have had cancer, something FORCE is working to change.
More insured people means preventative and curative treatment is more accessible. The good news for women who elect to have the surgeries that Jolie Pitt chose — a decision she made clear may not be right for all women — is that insurance companies generally do cover them. Among other reasons, it makes brute economic sense: Preventative surgery is cheaper than covering the cost of cancer.
Again, having insurance makes a difference, and more people are insured under the ACA, even if it can mean high out-of-pocket costs. “One problem is that a lot of policies have high deductibles and a lot of them have narrow networks of providers that you can go to, but they still will protect you from having to make the draconian choice of saving your life or saving your wallet,” said Robert I. Field, professor of law and health management and policy at Drexel University. But he pointed out that the preventative surgeries Jolie Pitt choose would still far exceed a typical deductible, which for some people could make the difference between going into bankruptcy or not.
Public awareness has improved, but we’ve got a ways to go. At one time in history, cancer patients were “protected” from their own diagnoses by doctors who thought they were doing them a favor if there was little hope of effective treatment. That’s no longer considered acceptable, but there is still some stigma around cancer, and cancers in reproductive and sexual organs can raise all kinds of painful feelings around fertility and sexuality.
“I think [Jolie Pitt] did people a service by showing the importance of being aware of your condition and showing it’s nothing to be ashamed of,” said Field. Jolie Pitt also emphasized taking charge of her care and speaking to multiple experts before making the decision to remove her fallopian tubes and ovaries.
A British study published in September 2014 in the peer-reviewed journal “Breast Cancer Research” found that referrals to clinics that specialize in family history and genetic assessment more than doubled after Jolie Pitt’s op-ed, and demand for the test for the genetic mutation nearly doubled. That spike continued several months after Jolie Pitt’s op-ed. The study’s authors speculated that Jolie Pitt’s “glamorous image and relationship to Brad Pitt” had helped put patients’ fears about a “loss of sexual identity post preventative surgery.”
But “public awareness” isn’t necessarily a public health good in and of itself. When researchers asked more than 2,500 adults about their reaction and awareness of Jolie Pitt’s first op-ed, three quarters of them knew about her double mastectomy but the rest of what they knew was muddy. Less then 10% of the survey participants could assess Jolie Pitt’s risk as a carrier of the BRCA gene versus a woman who isn’t one. “Awareness of the Angelina Jolie story was not associated with improved understanding,” the authors concluded in the Genetics in Medicine study.
Jolie Pitt’s medical history is highly specific, with a double-whammy of a genetic proclivity and a family history of deaths at young ages from cancer, and it doesn’t apply to every person at risk for cancer. Nor will it mean she is guaranteed not to get cancer anyway. As Field puts it, “Everyone has their own set of risk factors that include genetics, family history, lifestyle, and good fortune. And some people tend to get cancer for reasons that we don’t yet understand.”