"Angelina Jolie effect" boosted genetic testing rates, study suggests

Angelina Jolie’s revelation that she underwent a double mastectomy to reduce her chances of developing breast cancer boosted rates of genetic testing among women, but might have failed to reach those most at risk, new research suggests.

In a 2013 article for the New York Times, Jolie explained her decision to undergo a double mastectomy after finding that she had a mutation in a gene known as BRCA1 that greatly increased her risk of breast and ovarian cancers.

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“I am writing about it now because I hope that other women can benefit from my experience,” she wrote. “Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.” After surgery her risk of developing breast cancer in later life fell from 87% to 5%.

The actor’s decision to tell her story was welcomed by medical experts and campaigners worldwide. But did women heed Jolie’s call?

Writing in the British Medical Journal, Sunita Desai and Anupam Jena of Harvard Medical School describe how they sought to answer the question by scrutinising data on US health insurance claims from more than nine million women aged between 18 and 64 .

These revealed that in the 15 working days following Jolie’s article, daily rates of testing for harmful mutations in BRCA1 and BRCA2 genes rose by 64%, compared with the 15 working days before. After six months, average monthly testing rates were still 37% higher than in the four months before the article’s publication.

But the study also reveals that while genetic testing rates increased, there was no change in average, overall mastectomy rates in the six months following the article’s publication – and showed a slight drop in mastectomy rates among those who had BRCA tests.

“The fact that mastectomy rates dropped after Angelina Jolie’s editorial suggests that that denominator of women who started getting the BRCA test became less appropriate for the BRCA test because they had a lower pre-test probability of having the mutation in the first place,” said Desai.

However, Douglas Easton, professor of genetic epidemiology at the University of Cambridge, noted that the study did not offer insights into the BRCA test results – meaning it was not possible to say whether women taking the test received negative results, or whether they had tested positive, but decided not to undergo surgery.

But Jennifer Litton, associate professor in the department of breast medical oncology at the University of Texas, said the results reflected what had been seen in clinics.

“The ‘Jolie effect’ was real, and we did have many more breast cancer patients ask about the test,” she said. “As only a small proportion of breast cancer patients harbour an abnormal gene, those that met national guidelines for testing had already had testing, so it did not change that group with the highest risk of a positive test.”

The research is not the first to explore the impact of Angelina Jolie’s declarations, although previous UK-based studies found that both testing among women at risk, and subsequent preventative surgery, increased.

A co-author of the UK-based research, Tony Howell, professor of medical oncology and director of scientific research at Prevent Breast Cancer, says the new US study looked at too short a period after publication of Jolie’s article to truly reflect its impact. “It takes weeks or months to get through the testing process in proper centres,” he said. “Same applies to risk-reducing breast surgery. This takes one to three years to filter through to surgery if all the checks and counselling are performed properly.”

Overall, says Howell, the 2013 article was valuable in raising awareness. “Jolie did a terrific job,” he said.

"Angelina Jolie effect" boosted genetic testing rates, study suggests

How Bangladesh"s female health staff boosted household planning | Kenneth R Weiss

Sporting sandals and draped in a dark-blue sari, Aparajita Chakraborty glides into the cluster of hilltop houses with the self-assurance of a person who has long been making property calls.

She has. For a lot more than 30 years, Chakraborty has been visiting this extended loved ones, carrying out checkups and dispensing suggestions. But she is no doctor, she’s a neighborhood health employee who has been dispatched by the neighborhood hospital. However she has won the trust and gratitude of the surrounding villages by saving lives – largely from cholera and other deadly diarrhoeal ailments.

With all the men away, either functioning in the rice fields or having migrated to the city, Chakraborty quickly gets down to business in the family compound of half a dozen houses. She and a colleague perform a group interview, asking 4 females private queries this kind of as: when did they final menstruate? Are they taking the pill, or employing yet another strategy of household planning?

One particular female explains that she stopped taking the pill when her husband began functioning in Chittagong, a day’s journey away. She resumed her use of contraceptives right away following his surprise visit. By then it was also late, and she is now expecting their third kid.

Yet another woman says she is not utilizing any kind of contraception. The woman’s husband, it transpires, had a vasectomy following their fourth kid. But he doesn’t want his brothers to know for worry they will consider him impotent. So it’s a secret, albeit 1 that has been documented by hospital personnel, along with each and every birth, death, marriage, divorce and other essential statistic of 225,000 men and women in the region.

Chakraborty is aware of a lot more intimate specifics about the community than they know about one particular an additional. But discretion is paramount, she says: “I maintain what I hear to myself. I really feel like I am part of the family members.”

She is portion of an all-female cadre of local community wellness employees who span this portion of Bangladesh’s low-lying delta, cautiously maintaining one of the longest-running and most thorough well being and population information sets in the creating planet.

The Matlab hospital that dispatched Chakraborty has grown extensively considering that 1963, when it was launched as a cholera study station atop a barge close to Dhaka. The institution was set up by the Worldwide Centre for Diarrhoeal Condition Investigation, Bangladesh.

Half a century later on, this hub for little one and maternal overall health is widely credited for demonstrating how poor Muslim girls with little or no formal training can prepare their households. The strategy has spread during this densely populated, poverty-stricken nation, curbing its speedy population development.

In 2000, the UN projected that Bangladesh’s 160 million-strong population would soar to 265 million by 2050. The most current projections display the numbers are most likely to climb to somewhat far more than 200 million by mid-century just before stabilising quickly soon after.

“Matlab showed us the way,” says Ubaidur Rob, the non-revenue Population Council’s Bangladesh director. “Females had been employed as field workers in the 1970s, when fertility was extremely high and female employment was practically zero. This is exactly where adjust started.”

Its well-chronicled successes have created Matlab some thing of a mecca for public health researchers. At first, numerous were drawn to the rural outpost due to the fact it suffered typical cholera epidemics. Now, the lure is the comprehensive population and wellness database that can reflect the achievement or failure of a drug trial or well being intervention.

In the mid-70s, family preparing advocates made a decision this was an ideal area to check whether or not poor, beneath-educated girls in a religiously conservative area would adopt the use of contraceptives. To set up the experiment, researchers divided 149 villages into two groups. 1 half participated in the Matlab centre’s maternal and child healthcare initiatives, like residence delivery of modern contraceptives, although the other had entry only to government services.

The communities were otherwise identical: bad fishing and farming families living in bamboo homes, in villages with minor or no electrical power, operating water or sanitation. Most had filth floors and cooked on fires of wood, rice chaff and cow dung.

The area was 88% Muslim and contraception was denounced by Islamic clerics. Most households practised purdah – making it possible for women out of the home only if “appropriately” covered and escorted by a male relative.

Researchers swiftly realized it was not enough just to make contraceptives obtainable, says Dr Mohammad Yunus, who ran the Matlab centre for practically forty many years. What worked, he says, was a comprehensive doorstep support with educated female wellness staff making regular adhere to-up visits to assist mothers choose a approach of contraception that was very best for them, deal with side-effects and provide standard maternal and child healthcare.

Differences emerged right away. Married women had been more very likely to use contraceptives and, more than time, had an common of one.five fewer kids than their counterparts in the comparison area. Their young children had been more healthy, fewer girls died of pregnancy-relevant triggers, and little one mortality fell.

These families grew wealthier, too. With fewer youngsters to help, dad and mom accumulated much more farmland, constructed far more valuable homes and gained entry to working water. Their children stayed in school longer, and females enjoyed increased incomes.

The final results advised family members arranging was a price-efficient way to enhance public health and help lift folks out of poverty, well being experts explained. And it showed that communities do not have to grow to be wealthier or greater educated before birthrates can fall – if contraception is manufactured accessible in an appropriate way.

The Matlab centre’s programme drew the interest of government officials, who made a decision to roll it out in two regions. Matlab workers educated government employees in the door-to-door technique. By the early 80s, individuals places had experienced a similar enhance in contraceptive use, and the government set about education tens of thousands of female wellness staff utilizing the Matlab model.

“Above the next five years, it was phased in across the complete country,” Yunus says. “Bangladesh became a achievement story for family arranging and minimizing infant mortality.”

Because then, average birthrates have tumbled from six youngsters a lady to somewhat far more than two, and Bangladesh has grow to be one particular of the very first impoverished countries to meet the UN millennium growth objective of decreasing kid mortality by two-thirds.

• Ken Weiss writes on science, environment and public overall health for the LA Times and elsewhere

How Bangladesh"s female health staff boosted household planning | Kenneth R Weiss