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What all patients can learn from Angelina Jolie

Angelina, actress and model health communicator.
Angelina, actress and model health communicator.
Jon Kopaloff FilmMagic

There is no shortage of examples of bogus health claims by celebrities and their disastrous influence on public health and science. Over the years, famous folks have suggested that vaccines cause autism (Jenny McCarthy), that "miracle" diet supplements are the holy grail of weight loss (Mehmet Oz), and that steaming your vagina is, well, a good idea (Gwyneth Paltrow).

While their ability to influence our health choices is proven, it's rare that celebrities use that influence for good. A notable exception is actress Angelina Jolie, who came out Tuesday as a model health communicator, writing in a New York Times op-ed about the removal of her ovaries and fallopian tubes.

nytimes

The latest Jolie op-ed published in the New York Times.

"A simple blood test had revealed that I carried a mutation in the BRCA1 gene," she wrote. "It gave me an estimated 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer." In order to reduce her likelihood of developing cancer, she had a double mastectomy two years ago, followed by an oophorectomy this month.

Instead of exaggerating the benefits of her surgeries, or advising women to follow her lead to the clinic, Jolie was thoughtful and balanced. She should be applauded for describing in very clear terms the benefits, costs, risks of harm, and trade-offs of her decision to undergo the preventive operations.

Eight lessons from Jolie’s recent op-ed

  1. She studied her own family medical history — one of the biggest predictors of future risk. "I lost my mother, grandmother, and aunt to cancer," she wrote, understanding that this put her at an increased risk for developing the disease.
  2. Jolie did her own research and weighed her options: "So I was readying myself physically and emotionally, discussing options with doctors, researching alternative medicine, and mapping my hormones for estrogen or progesterone replacement. But I felt I still had months to make the date."
  3. She spoke with her doctor about potential paths and considered them extensively. "I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this," she wrote. "A positive BRCA test does not mean a leap to surgery."
  4. She cautioned other women against surgery just because of genetic testing and outlined other potential courses of action, noting that good health requires personalized decision-making: "Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally."
  5. She chose a less invasive operation than she could have: "I chose to keep my uterus because cancer in that location is not part of my family history," she wrote. Though her decision to undergo multiple surgeries could be seen as a more extreme reaction to her diagnosis — instead of, for example, watchful waiting — Jolie minimized the procedure where she and her doctor felt she could.
  6. Jolie acknowledged something many of her peers don't: medicine doesn't have all the answers. "It is not possible to remove all risk," she wrote. This is something that is remarkably rare in the realm of celebrity health advice, where fast fixes, particularly at a steep price, abound.
  7. Jolie weighed the benefits of treatment against an assessment of the potential harms and trade-offs involved. In her own words, "Regardless of the hormone replacements I’m taking, I am now in menopause. I will not be able to have any more children, and I expect some physical changes."

Celebrity medicine is often bad

Jenny mccarthy

Actress Jenny McCarthy, a booster of the bogus MMR-vaccine autism link. (Mat Hayward/Getty Images)

Where Jolie won today with her celebrity health column, many others before her have failed.

There are the Jenny McCarthys and Michael Douglases of the world who completely distort health science. There are the Kelsey Grammers and the Paula Deens who wage "disease awareness" campaigns and implicitly hawk pharmaceuticals — without disclosing the fact that they are also being paid by drug companies to do so. There are people like Katie Couric, who go on well-meaning but misguided quests to push cancer screening even when it may not be helpful for most.

Finally, there are the countless stars who have peddled various diets, exercise programs, and supplements — only discussing the potential benefits and not the harms or side effects, simply because they have a book or product to sell.

Celebrity medicine works — for better and worse

It’s not surprising that celebrities continually dole out health advice, paid and unpaid, for this single reason: it works on us.

But its side effects aren't always positive.

In a study published in the journal Genetics in Medicine, researchers looked at the impact of Jolie’s first op-ed — about her choice to undergo a mastectomy — on people's understanding of the risk of breast and ovarian cancer. They concluded it didn't actually help. "While three of four Americans were aware of Angelina Jolie's double mastectomy," they wrote, "fewer than 10 percent of respondents had the information necessary to accurately interpret Ms. Jolie's risk of developing cancer relative to a woman unaffected by the BRCA gene mutation." In other words, while nuanced, her piece didn't boost people's knowledge of the science.

Perhaps this was because of the failure of journalists to communicate the details of Jolie's argument. In another study, researchers found that reporters took an overwhelmingly positive slant on Jolie's surgeries, instead of discussing the relative rarity of her condition and the fact that most women would have many other options besides invasive procedures.

This worries Dr. Gilbert Welch, the author of Less Medicine, More Health and a professor of medicine at Dartmouth. "The most important context of the [Jolie op-ed] is that it’s not relevant to the vast majority of American women," he said. "The reason is they don’t have the mutation that Jolie does."

Even when celebrities like Jolie get it right, Welch noted that their messages may not always get through to people intact. "I worry the simple storyline that will come through [from Jolie] is that everybody should be tested and more mastectomies and oophorectomies should be done." That's not something a dose of even the best celebrity medicine can fix.

Welcome to Burden of Proof, a regular column in which Julia Belluz (a journalist) and Steven Hoffman (an academic) join forces to tackle the most pressing health issues of our time and uncover the best science behind them. Have suggestions or comments? Email Belluz and Hoffman or Tweet us @juliaoftorontoand @shoffmania. You can see previous columns here.