The 'Angelina Jolie Effect': Mastectomy Revelation Doubled Breast Gene Test Referrals

'Angelina Effect' Has Had Long Term Impact On UK Women

After Angelina Jolie announced she’d had a preventative double mastectomy to reduce her risk of breast cancer, NHS referrals for genetic counselling and tests for breast cancer risk more than doubled in the UK, new research has revealed.

In an opinion piece for the New York Post, Jolie announced in May 2013 she had chosen to have the surgery after she discovered she had an 87% chance of contracting breast cancer because of a high-risk gene mutation (BRCA1).

The actress’s mother had died of breast cancer and her aunt died of the disease just two weeks after she revealed the news of her double mastectomy.

A new study, based on data from 21 centres, has revealed that what has been dubbed ‘the Angelina Jolie effect’ was not only immediate, but also long-lasting, with the rise in referrals continuing through to October – long after the announcement was made.

The researchers, led by Gareth Evans, from Genesis Breast Cancer Prevention and St Mary’s Hospital, Manchester, studied data from 12 family history clinics and nine regional genetic centres in the UK.

They found that there was a two and a half-fold increase in referrals by their GPs for June and July 2013 immediately after the actress’s announcement, compared to the same two months in 2012. The rise continued from August to October with a two-fold increase over the same period the previous year.

The research, which was part-funded by Breast Cancer Campaign, also found that contrary to concerns that the resulting increase in inquiries would be from women with unwarranted fears, there was no evidence of a higher proportion of inappropriate GP referrals.

Women with genuine concerns about their family history, as well as those who had missed screenings, were approaching their GPs to seek advice, which translated into appropriate referrals for testing.

Lead researcher, Gareth Evans, professor of clinical genetics at Genesis Breast Cancer Prevention, said: “Although there was concern that the increase in attendance following Ms Jolie’s announcement might have been from the 'worried well' coming back for an early repeat screen, our research found that the opposite was true. A higher proportion was from women who were late for their test, rather than those who were coming back early.”

It has long been known that health news stories can have a short-term impact on the number of people seeking professional medical advice.

Both Kylie Minogue, who was diagnosed with breast cancer in 2005, and Big Brother contestant, Jade Goody, who was diagnosed in 2008 and died from the disease in 2009, prompted spikes in the number of women being screened for breast cancer, following their respective diagnoses.

But this new study revealed longer-term implications as a result of the ‘Angelina Effect’.

Evans suggested that Jolie’s image as a “glamorous and strong” woman could be a reason for the extensive impact of this particular story.

“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,” he said.

Grete Brauten-Smith, Clinical Nurse Specialist at Breast Cancer Care, said: “It is positive that Angelina felt surgery didn’t reduce her feelings of femininity”, though she warns that “people’s experiences of surgery vary”.

Baroness Delyth Morgan, Chief Executive at Breast Cancer Campaign, has condoned the actress’s decision to go public about her preventative surgery:

“Without Angelina Jolie’s openness in talking about her BRCA1 mutation and decision to have a risk-reducing mastectomy, followed by the publication and publicity around the updated NICE guidelines soon after, many women may not have approached health services and so would never have had their risk and risk-reducing options explained.”

However, Baroness Morgan also remarked on the importance of further funding, to ensure there are adequate resources to meet the demands of increased referrals.

She added: “This study highlights that funding for genetic services needs to be able to quickly respond to increased levels of referrals, if we are to ensure risk counselling and genetic testing remains available for everyone in need of them.

"The current level of funding available for this service should be reviewed, to avoid unnecessary delays, which can be very stressful for patients.”

The ‘Angelina Effect’ has also underlined the need for accurate awareness of the facts around breast cancer risk, family history and preventative treatment.

According to Breast Cancer Campaign scientists, a preventative mastectomy does not eliminate breast cancer risk altogether, but is thought to reduce it in BRCA mutation carriers by 90%, which would reduce a woman’s risk to lower than the average for women without a mutation in the UK.

Breast cancer can still occur in the chest wall so mastectomy cannot reduce risk completely.

“It’s important that the 5% who have inherited an altered BRCA gene are able to make an informed decision about risk-reducing surgery and other options available to them,” says Breast Cancer Cares' Brauten-Smith.

“If you’re concerned about your family history, the first step is to talk to your GP,” she adds.

BRCA-gene mutations: the facts

  • BRCA1 mutation is inherited from a parent, and is the cause of at least 10% of breast cancers.
  • Women who have the BRCA1 gene mutation have between 45 – 90% risk of developing breast cancer in their lifetime.
  • If you have a strong family history of breast cancer and a living relative with breast cancer, it is possible to test for the mutation.
  • Clinical guidance in the UK, recommends that only women who are at a greater risk of developing breast cancer should be referred for genetic testing at a family history clinic or a regional genetics centre.
  • Having a BRCA mutation also increases the risk of developing ovarian cancer and a number of other cancers, which can develop earlier in life (‘early-onset’) such as pancreatic cancer, prostate cancer, sarcoma and adrenal carcinoma.