Angelina Jolie’s Decision

Actress Angelina Jolie Pitt wrote an essay that was published on the New York Times op-ed page today about her decision to have her ovaries and fallopian tubes removed.

CLICK HERE TO READ THE ESSAY.

This comes two years after an essay in which she described her preventative double mastectomy. Jolie Pitt is not removing body parts on a whim. Not only does she have the BRCA1 gene, which greatly increases a woman’s risk of breast and ovarian cancer, but her mother, grandmother and aunt all died of cancer. That kind of family history is taken very seriously for a range of diseases. For instance, I’ve known men on beyond-strict, enjoyment-free diets because their father, grandfather and uncle all died of heart disease by age 50. If they could remove something besides all pleasurable food and drink from their bodies, I’m sure they would.

Ovarian cancer is much harder to detect than breast cancer, so this was probably the more important surgery for Jolie Pitt. There are no reliable screening tests for ovarian cancer, unlike breast cancer (mammograms/ultrasound) and cervical cancer (Pap test). The American Cancer Society website says:

“Early cancers of the ovaries often cause no symptoms. When ovarian cancer causes symptoms, they tend to be symptoms that are more commonly caused by other things. … By the time ovarian cancer is considered as a possible cause of these symptoms, it usually has already spread beyond the ovaries.”

I’ve been rolling my eyes at some of the online criticism Jolie Pitt is getting both for her choice and for going public with it. She is not saying that all women with the gene need to follow her lead. She is perfectly clear about that:

“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery.”

She goes on to list several other options for women facing increased cancer risk, emphasizing that you should “choose what is right for you personally.”

Nor does she naively think that she is death-proof now, writing:

“It is not possible to remove all risk, and the fact is I remain prone to cancer.”

I’ve seen a lot of people resentfully point out that other women have faced the same risks and made the same decisions without getting to write about it in the New York Times. Sure, but that doesn’t mean Jolie Pitt shouldn’t take advantage of public interest in her to speak out. In fact, Jolie Pitt’s openness on the topic gives other women an easier way to talk about their health and say, “That happened to me too,” the same way former First Lady Betty Ford’s openness about her breast cancer diagnosis and mastectomy changed attitudes towards the disease in the 1970s. I’m old enough to remember when folks were reluctant to even say the word “cancer.” They called it the “c-word” or dropped their voices to a whisper on the word “cancer.” It’s pretty difficult to raise money to research a disease, or, on a more personal level, even speak to your doctor about your health when something is so scary that you tiptoe around the name like it’s “Voldemort.”  (Betty Ford went on to similarly raise awareness of substance abuse, establishing the Betty Ford Center in 1982.)

Speaking of going public, I like the way Jolie Pitt states, “I am now in menopause” following the removal of her ovaries and that she describes what hormone-replacement options she’s chosen (an estrogen patch and a progesterone IUD). Menopause is usually treated as a big shameful secret, the same way cancer used to be, but every woman is going to experience menopause eventually, whether due to age or illness. It’s helpful to see premature menopause calmly acknowledged, especially by someone in an industry that so values youth.

A final, frequent criticism of Jolie Pitt is that she’s too privileged and has health-care options that other women do not, so it is wrong of her to share her personal journey. Hiding the possibilities is what keeps them reserved for the few. Shining a light on all the options allows people to demand equal access. If someone dies because she can’t afford Jolie Pitt’s treatment, is that Jolie Pitt’s fault for being too wealthy? Is it the patient’s fault for not being Jolie Pitt? Or is it the fault of a system that could be fixed? I think it’s a crime — literally, a crime — that the U.S. doesn’t have the kind of free health care available in so many other industrialized nations. The Affordable Care Act doesn’t go far enough: In a developed country like ours, access to health care should be a right, not a privilege. I know a lot of people in the U.S. fear that the immediate next step after socialized medicine is communism, even though England, France, Canada, Sweden and numerous other countries are not, in fact, communist. I know the other health-care systems aren’t perfect. But I also know people who hadn’t gone to the doctor for five years due to a lack of insurance until the (still high-priced) Affordable Care Act finally covered them.

I know someone whose son, a French citizen, was treated in Paris for a life-threatening illness requiring months of hospitalization. The total out-of-pocket cost was $2,000, and the father expected to be eventually reimbursed even for that amount. The U.S. cost would have gone as high as $2 million. Interestingly, the father was later traveling in the U.S. when he developed a non-life-threatening but excruciating hernia.  If I recall correctly, the cost of the emergency surgery was about $40,000, and hospital staff was pestering him for a credit card as soon as he arrived at the emergency room in agonizing pain. He got to see the difference in systems up close and personal.

If you want to learn about what really goes on at hospitals, check out journalist Steven Brill’s award-winning Time magazine cover story called “Bitter Pill: Why Medical Bills Are Killing Us.” The lengthy piece, from 2013, is worth the subscription price. Nonprofit hospitals, as it turns out, make a lot of money. But you might want to skip the article and go straight to Brill’s follow-up book, America’s Bitter Pill: Money, Politics, Back-Room Deals, and the Fight to Fix Our Broken Healthcare System, which came out this January. I have to buy it. It’s about, as NPR described it, “the political fights and the medical and pharmaceutical industry lobbying that made it difficult to pass any health care overhaul — and led to the compromises of the Affordable Care Act. The law enables millions more people to afford health insurance, he writes, but it also adds new layers of bureaucracy — and many confusing new regulations.” In between the article and the book, Brill underwent heart surgery for his own life-threatening condition, so like my French friend, he got to peruse hospital bills more than he would have liked. In Brill’s NPR interview, he described one of his bills this way:

“‘Amount billed: zero. Amount insurance company paid: zero.’ And the third column said, ‘Amount you owe: $154.’ So it makes no sense.”

It just so happened that, for his book, he had scheduled an interview with the CEO of United Healthcare, the largest health insurance company in the U.S. and his own insurer. At the end of the interview he asked about his own bill.

“‘How can I owe $154 if nothing was billed?’ He looks at it … and looks up at me and says, ‘I could sit here all day and I couldn’t explain that to you. I have no idea why they sent this to you.'”

It would be funny if it weren’t terrifying!

An older article (which can be read for free) is a September 2009 Atlantic article by David Goldhill, called “How American Health Care Killed My Father.” He argues against being resigned to the difficult, exclusionary system we’re used to and comes out in favor of a “consumer-driven” health-care system. He offers detail on one proposal that would provide everyone with equal coverage for catastrophic events/illnesses and a new form of health savings account for everything else. It’s interesting. I’m open to any ideas that would enable everyone to get Jolie Pitt-worthy care. Don’t be angry at her; be inspired!

UPDATED TO ADD: Turns out Angelina’s family is more affected by cancer than previously known.