This well-written story provides a compelling narrative on Ms. Jolie-Pitt’s, Ms. Krances’ and Ms Zelenske’s journey along with supportive comments by three experts in the field. The story does a nice job in describing the different approaches and the rationale for each. Unfortunately, the story lacks a couple of pieces of information that we think are important in any health related story. We think that readers deserved a bit more on the issue of insurance coverage, as well as on the benefits of the elective ovary removal. What is the reduction in risk of developing ovarian cancer with the surgery? We’d also like to see some reference to the evidence — studies, expert guidelines, etc. — that supports these experts’ advice. The potential harms associated with the surgery were mentioned briefly in Ms. Zelenske’s story, but others such as bleeding, infection, and the like are not.
We also think that providing readers with links to additional information would have been helpful without diluting the narratives. Here are some sites we’d recommend:
In our celebrity-obsessed culture, health recommendations from famous people carry more weight than they should. And so when someone like Angelina Jolie Pitt goes public to describe her health care decision-making, the news media need to be ready to compare that narrative against the evidence. In this case, it appears that Ms. Jolie Pitt’s guidance is on the mark and provides very useful information for people in a similar situation. Although relatively uncommon, the BRCA 1 and BRCA 2 mutations place both men and women with the mutation at an increased risk of a variety of cancers. In women, the risk of breast and ovarian cancer is sufficient to make elective removal of breasts and ovaries a standard of care.
Since the story focuses on the story of Ms. Jolie Pitt, a woman with financial resources beyond those of most women, we think discussion of costs is particularly relevant. First, there are costs of genetic testing to find out if you carry the BRCA mutation. Those tests may cost hundreds or several thousand dollars, and insurance coverage for the tests varies with different carriers. [As noted by a commenter, the costs of BRCA testing are covered under the Affordable Care Act for women at high risk of breast cancer. Here’s a post from the KevinMD blog with more information] As far as the surgery goes, commercial and government insurers consider elective removal of ovaries and bilateral mastectomy to be standard of care for this condition, and provide coverage under a specific set of criteria.
The story never really provides any data on the risk reduction seen in women with BRCA1 or BRCA 2 mutations due to removal of their ovaries and breasts. Readers are advised that removal of ovaries reduces risk of breast cancer, but no mention is made of the reduction in risk of ovarian cancer. Risk is not totally eliminated.
The story does point out that a woman would be expected to suffer from post-menopausal symptoms after removal of her ovaries and that treatments are available. However, no information is provided about the potential harms related to the surgical procedure.
The comments of three experts in the field lend credibility to Ms. Jolie Pitt’s choices. As these experts make clear, prophylactic ovary removal is indeed recommended for women with BRCA mutations. But we were disappointed that the Times didn’t reference any relevant studies or guidelines that demonstrate benefit from the procedure. At times like this, we look to the Times to set itself apart by at least linking to the evidence that supports the intervention under consideration. An experts-only approach is inadequate, because one can’t be certain that every expert subscribes to the best available evidence. Again, we also think that recognizing that the procedures are covered by insurers who consider this approach to be standard of care would have enhanced the discussion.
No disease mongering here. The story makes it clear that the BRCA 1 and BRCA 2 mutations are associated with a minority of cases of breast and ovarian cancer.
The story provides excellent comments from three experts in the field. No conflicts of interest are apparent.
The story does a very good job in highlighting the different approaches and the relative advantages and disadvantages of each including surveillance with CA-125 measurements. But while observation is not an ideal option for women at increased risk of ovarian cancer, the story could have explained that the risk is not as high for ovarian cancer as it is for breast cancer. For the BRCA1 mutation, risk of ovarian cancer is about 40%, but for BRCA2 there is a 10% to 17% lifetime risk of ovarian cancer.
The comments of Drs. Domchek, Offit, and Bakkum-Gamez make it clear that the surgical procedure is widely available.
There is no claim to novelty here. The story is clear that it was prompted by Ms. Jolie Pitt’s op-ed in the New York Times.
The basis for the story is an Op-Ed in the NY times by Ms. Jolie Pitt. The comments of the experts in the field provide additional information beyond the original story.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
Comments (2)
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Dave
March 30, 2015 at 10:34 amOne question I haven’t seen reported on is: what insurance plans would even consider paying for such surgery? I guess one should applaud Angelina Jolie Pitt for being so open, but what does her openness really do if such elective surgery is only affordable to the rich and famous? — Assuming, of course, it has any worthwhile health benefit at all.
Sue Rochman
March 30, 2015 at 11:13 amA comment on the cost of intervention: For women who are at high risk of carrying a BRCA mutation (family history of breast/ovarian cancer, parent with BRCA mutation, etc.) genetic counseling and testing is covered under the ACA.
http://www.cms.gov/CCIIO/Resources/Fact-Sheets-and-FAQs/aca_implementation_faqs18.html
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