It’s not unusual that human interest stories covering a specific health issue can lead to an increased interest in a particular health service. These surges in awareness are however generally quite short-lived.
But in May 2013 Angelina Jolie revealed that she carried a maternally inherited pathogenic BRCA1 mutation and had undergone surgery to remove the risk of developing breast cancer, known as bilateral risk-reducing mastectomy (BRRM). The story was covered by all kinds of news outlets for several weeks.
According to her article, Angelina Jolie lost her mother, grandmother and aunt to cancer and decided to take matters into her own hands to spare her children the grief of losing their mother too. The honest and very informative nature of ‘My Medical Choice‘ increased awareness of familial cancer in the community and encouraged women to consider genetic testing.
Additionally, the glamorous image of the celebrity herself might have lessened women’s fears of losing their sexual identity post preventative surgery.
At the end of last year, Breast Cancer Research published an article that assessed the so-called ‘Angelina Jolie effect’ on the increase of referrals to genetic testing facilities as well as enquiries about risk-reducing surgeries.
As it takes 9–12 months from initial enquiry to surgery, they were not able to report on the increase of procedures at that time.
Referral rates were around 2.5-fold higher in June and July from 1,981 in 2012 to 4,847 in 2013 and around 2-fold higher in August through to October. The referral rates then settled to 32% higher towards the end of the year.
The researchers also highlighted an increased interest in BRRM. However, as it takes 9–12 months from initial enquiry to surgery, they were not able to report on the increase of procedures at that time.
The researchers now confirmed their hypothesis in a Letter to the Editor, published in Breast Cancer Research today. They found that the number of preventative double mastectomies performed at the clinic more than doubled from January 2014 to June 2015, with 83 procedures performed during this period, compared to 29 between January 2011 and June 2012.
We spoke to the author of both articles, Gareth Evans, Professor of Medical Genetics and Cancer Epidemiology at The University of Manchester and Professor of clinical genetics at the Genesis Breast Cancer Prevention Centre.
What is BRCA1 and what is its significance in breast cancer?
BRCA1 is a gene involved in repairing DNA by a pathway known as homologous recombination. About 1 in 1000 people carry a fault in the BRCA1 gene that they have inherited in one of their two copies.
Having a fault in BRCA1 means that a woman has between a 40-85% risk of developing breast cancer and a 40-60% risk of ovarian cancer.
The 2.5 fold increase in referrals was far higher than with any previous publicity surrounding familial breast cancer.
You report a 2.5 fold increase in referrals of UK women with a family history of breast cancer following Angelina Jolie’s public announcement. How does this figure compare to your expectations?
The 2.5 fold increase in referrals was far higher than with any previous publicity surrounding familial breast cancer. It therefore far exceeded our expectation both in the amount of the increase and the longevity of it.
You mention the BRRM rate also increased for those without mutations. Is the procedure necessary for all patients that have it?
BRRM is a choice for women at high risk of breast cancer with or without known BRCA mutations. It is not advised that all women should have BRRM just that this should be an option for them.
What are the implications of your work?
It is likely that there will be a greater need for operation time for BRRMs which take between 3-6 hours with skin sparing approach and immediate reconstruction. More surgeons may need to be trained to accommodate the extra demand.
Do you have any further research planned to investigate the ‘Angelina Jolie effect’?
We plan to continue following the trends in referrals and surgery stimulated by Angelina’s revelations.
Angelina Jolie has recently written another piece for the New York Times in which she describes in much detail why she underwent another preventive surgery, the removal of her ovaries and fallopian tubes. It would be interesting to see if this will have an effect on the number of these risk-reducing surgeries too.