Angelina Jolie and Celebrity Health Advocacy

This week’s celebrity health health advocacy headlines have been dominated by the sensational NY Times article by Angelina Jolie going public after her prophylactic double mastectomy and her BRCA1 gene mutation.  When famous people are forced to deal with difficult medical decisions, as Ms. Jolie certainly had to face, their decisions and consequences are influential to others in similar situations.  This has positive and potentially negative public health consequences. The public may assume that since these celebrities have nearly unlimited access to information and expert advice, and the cost of care is not a major factor for them, that their decisions and care must be the best choices for anyone in similar or related situations.

As the physician husband of a woman with ovarian cancer who has a BRCA2 gene mutation I’ve thought a bit about how to express my feelings as a physician and as one who loves and cares for a woman in a similar situation, and have been unable to put my feelings and opinions in writing.  I’ve read several editorial pieces about the topic and none really addressed the issues I want to highlight.  Then today I saw an article by Dr. Kenny Lin.  Dr. Lin is one of the thought leaders in public health, a former member of the USPSTF and an outspoken advocate of public health policy that is thoroughly researched and based on the best evidence available.  In his article he talks about the aftereffects of the Katie Couric crusade to promote colonoscopy for screening of colorectal cancer after her husband’s death from that disease, and he addresses some of the difficult issues surrounding BRCA genetic testing. I found his article better than anything I could write, and urge you to see his discussion:

Breast Cancer and the Angelina Jolie Effect

Published at his blog  Common Sense Family Doctor on May 15, 2013

“There is nothing like a celebrity to call attention to a preventable disease, especially if that disease is cancer.  …”           This is well worth the read.  See the rest of his article.

One issue he did not discuss is the patent law surrounding the BRCA gene testing.  If you are interested see a previous post: BRCA Gene Patent

2 Responses to Angelina Jolie and Celebrity Health Advocacy

  1. Mary, Once a woman knows she has a BRCA gene mutation in most cases she should consult with a physician well informed about the risks and options she is facing in order to make the choices best for her own situation. Many times this will include consulting a genetic counselor. In most cases a woman will find a prophylactic oophorectomy with or without a hysterectomy after she is finished having children is best for her. The decision on how to manage the breast cancer risk is less clearcut. Prophylactic double mastectomy vs. very careful screening to detect breast cancer early with or without taking a medication to reduce breast cancer risk like tamoxiphen are the most commonly chosen approaches. I believe all women should become informed and make the choices that are the best for them. If you mean should evey woman have prophylactic double mastectomy, then no, some women may reasonably choose not to have this surgical prophylactic approach. Still, because of the extremely high risk of developing breast cancer all women with the BRCA 1 or 2 gene mutations need to take some action, either prophylactic double mastectomy or very diligent diagnostic testing to find the cancer at the earliest possible time if they choose to keep their breasts. Hope this helps. I too hope that the gene patent laws change to make appropriate genetic testing more affordable and more open to critical analysis. With only one company controlling the BRCA gene testing the price remains very high, and any attempts to criticaly analyze the accuracy and efficacy of the available test can be thwarted by the company who owns the rights to the test. DrP.

  2. The article just referenced the unnecessary causes for screening and not what to do when you have the gene. Is knowing you have the gene mean you should take prophylactic action in all cases?

    Hopefully the blood test will be accessed more readily in the near future.

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