The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services

It is frequent for news items to lead to a short-lived temporary increase in interest in a particular health-related service. It is rare for this to have a long-lasting effect. In 2013 in the UK in particular there has been unprecedented publicity on hereditary breast cancer with a pre-release of the National Institute of Health and Care Excellence (NICE) guidelines on familial breast cancer in January 2013 and their final release on 26 June. The release of NICE guidelines created much publicity over the potential for use of chemoprevention [1] using tamoxifen or raloxifene. However, the longest-lasting news story was the release of details surrounding the film actress Angelina Jolie’s decision to have genetic testing for the BRCA1 gene and subsequently undergo risk-reducing mastectomy (RRM). Unusually this story lasted several weeks in the newspapers and on TV and radio, and longer in magazines. Indeed the story resurfaced with news items on the BBC in December. The so-called Angelina Jolie effect prompted publicity across the English-speaking world with articles in newspapers about the effects on breast screening, hereditary breast cancer clinics and genetics services in the USA, Canada, Australia, New Zealand and the UK [2]-[6]. An article in Australia confirmed a tripling in breast cancer referrals for genetics, family cancer centres in Victoria, New South Wales and South Australia, which had a combined 90 referrals a week in the six weeks before Ms Jolie’s announcement, which doubled and then tripled to a peak of 280 referrals in the weeks after. The article from November some 6 months after the Jolie story broke on 14 May, showed that referrals had since settled at about 190 a week, demonstrating the Angelina effect was ongoing. There was some initial press criticism of Ms Jolie’s decision to undergo RRM, but this abated to a large extent when it was announced 15 days after the initial news story that her aunt had died of breast cancer (the initial stories only mentioned ovarian cancer in her mother). Calls to the Hereditary Breast Cancer Helpline in the UK have increased 10-fold and still remained high in January 2014 [7]. The helpline states that no other news story has had such an effect [7]. All the familial breast cancer clinics we have contacted in the UK have noted increases in referrals that they attribute to the story.

Referral patterns for the 21 centres (12 FHCs and 9 RGCs) that participated are shown in Figure 1b and Table 1. Centres that did not supply data either did not have this available or were unable to collate the data. The data were available across Wales through the All Wales Genetics Service, covering seven Welsh regions and a population of around 3.1 million people. Further data were available from the Genesis Prevention Centre in Manchester and FHCs in Crewe, Bath, The Royal Marsden and St Bartholomew’s London, Derby, Coventry, Nottingham, Grantham, City Hospital Birmingham, Londonderry and Edinburgh. RGC data were available from Aberdeen, Leicester, Bristol, Guy’s and North-West Thames, London, Nottingham, Birmingham and Southampton.

Although referral rates were 17% higher in January to April 2013, the rates clearly rose further in May and June before an effect from the release of the full NICE guidance would have been seen. The nearly 50% increase in May reflects that only half the month would have been available to women to see their general practitioners (GPs) for a referral. Rates were around 2.5-fold higher in June and July from 1,981 (2012) to 4,847 (2013) and around 2-fold higher still in August through to October. The referral rates then settled back to 32% higher in November/December.

The extensive publicity when the updated NICE clinical guideline was published focused largely on chemoprevention and resulted in only a marginal increase in referrals relating to use of tamoxifen or raloxifene. In contrast, all participating centres were conscious of a more significant increase in women attending referring to the Angelina Jolie story and further, noted women seen in the past seeking updated advice on testing and risk-reducing surgery. Areas with very strong FHCs saw less pronounced effects in their RGCs. Altogether referrals rose from 12,142 in 2012 to 19,751 in 2013. Data from the Manchester FHC showed that 451/678 (Figure 1b, 66.5%) of referrals in 2013 were eligible to be seen after a questionnaire was received compared to similar proportions in the two previous years 265/421 (63%) in 2012 and 304/455 (67%) in 2011. The effects on referrals for genetic testing are likely to be confounded by the change in NICE guidance threshold that was heralded in January 2013 and ratified in June. Nonetheless, in seven RGCs (Manchester, Leicester, Nottingham, Wales, Southampton, NW Thames, Guys, East of Scotland) we saw a rise from 538 full BRCA1/2 tests in July 2012 to December 2012 compared to 967 (80% increase) for the same period in 2013, despite no extra funding being available for testing. The effects on referral for RRM were also assessable in Manchester for the same 6-month periods. As it takes an average of 8 months for women to go through two genetic counselling sessions a psychological assessment and two surgical sessions before surgery is possible in women unaffected with breast cancer [12],[14], we assessed the rates of referral for psychological assessment in the same study periods (July to December). There were 13 referrals in 2012 compared to 24 in 2013. All services have found the increase in demand through referrals and increased genetic testing difficult as there is no mechanism for additional funding in the UK Health service to cover such eventualities.

Angelina Jolie stating she has a BRCA1 mutation and going on to have a RRM is likely to have had a bigger impact than other celebrity announcements possibly due to her glamorous image and relationship to Brad Pitt. This may have lessened patients’ fears about a loss of sexual identity post preventative surgery and encouraged those who had not previously engaged with health services to consider genetic testing. It is not currently standard practice to proactively take a family history of cancer in primary care [11]. Hence there is an onus on at-risk relatives to be aware of their family history and request screening or risk-reducing strategies, resulting in possible inequality of access. Education of the general public is therefore extremely important in increasing awareness of, and improving access to, familial cancer services. This is particularly relevant due to the NICE guidance update increasing access to genetic testing, screening and chemoprevention [12].