A warning sign at a former Royal Mail sorting office in London. Photo: Getty
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Killer dust: why is asbestos still killing people?

Nic Fleming finds out in a twisting tale of industry cover-ups and misinformation that spans decades.

A long vertical pipe sits against white-painted brickwork in the corner of a cramped storeroom. Two men wearing orange boiler suits and gloves crouch at its base. One uses a scraper to remove lumps of what looks like wet papier-mâché from the outside of the pipe, into a red bag held by the other.

Both men are breathing through facemasks, their air sucked from outside the isolation unit: a short, makeshift corridor constructed from black plastic panels and transparent polythene sheeting. An extractor fan hums relentlessly.

It might look like a scene from a horror movie in which scientists fight to contain a virus, but the truth is more banal – though no less deadly. The two men are removing asbestos insulation from a heating pipe in a west London hospital.

Ordinarily there would be bright yellow tape with the words “WARNING asbestos” on it, the site supervisor tells me. But this is an especially sensitive job. The neighbouring ward’s beds are filled by patients with acute respiratory conditions, and the hospital’s management decided that advertising the true nature of the work might cause alarm.

Thirteen people a day in the UK die from exposure to asbestos – more than double the number that die on the roads. In the USA, asbestos will be responsible for around 10,000 deaths this year, meaning it kills close to as many people as gun crime or skin cancer.

Health fears associated with asbestos were first raised at the end of the 19th century. Asbestosis, an inflammatory condition affecting the lungs that causes shortness of breath, coughing and other lung damage, was described in medical literature in the 1920s. By the mid-1950s, when the first epidemiological study of asbestos-related lung cancer was published, the link to fatal disease was well established.

Yet in 2012, rather than falling, worldwide asbestos production increased and international exports surged by 20 per cent. A full ban did not come into force in the UK until 1999, and the European Union’s deadline for member states to end its use was just nine years ago. Today, asbestos is still used in large quantities in many parts of Asia, eastern Europe and South America, while even in the USA and Canada, controlled use is allowed.

The remarkable endurance of this magic mineral turned deadly dust is a complex tale. One of scientific deception and betrayal, greed, political collusion, the power of propaganda, and, above all, the willingness of some executives to knowingly subject hundreds of thousands of vulnerable people around the world to severe illness and even death in the pursuit of profit.

Living proof

One man for whom the risks of asbestos are all too clear is Winston Bish. Two years ago the former carpenter, now aged 70, took part in a questionnaire study on lung health. Among the half of participants randomly selected to have a CT scan, he was subsequently diagnosed with mesothelioma, a rare cancer that develops in the protective linings of organs, most commonly the lungs. There is no cure.

“When the doctor said ‘mesothelioma’, I didn't really know what it was,” says Bish in a hoarse whisper, caused by cancer-related nerve damage to his vocal cords. “Now I know it's the worst form of lung cancer you can get.”

As a boy, Bish was good with his hands and used to stay behind after class for extra woodwork lessons. He left school at 15 and spent his working life in the building industry. He had frequent contact with asbestos in a variety of forms, including in guttering and roof panels.

Winston Bish shot by Ben Gilbert/Wellcome Trust

“We were cutting those up from sheets with handsaws and knocking nails into them,” Bish says. None of his employers warned him or his co-workers of the dangers of working with asbestos, and doing such work without facemasks or ventilators was commonplace, he says. It’s a far cry from the precautions taken by specialist asbestos removal teams today.

Bish and his wife Jennifer married in 1966 and had two children. In the mid-1970s, he built a four-bedroomed detached house on the outskirts of St Ives, Cambridgeshire, as the family’s home. As was normal practice at the time, he put asbestos fireproofing panels in the garage roof – they are still there.

It was not until the 1980s that Bish remembers fears about asbestos spreading among building workers. “We became aware through word of mouth in the industry,” he says. “I don’t remember any big advertising campaigns at that time. Even now there is very little awareness.”

In October 2012, he had the lining of his right lung removed surgically, and now lives with the knowledge that the survival rates for mesothelioma patients are poor. Only about four out of every ten people diagnosed are still alive a year later, although the outlook is better for those able to have surgery to remove the cancer. Bish has recently completed a course of chemotherapy, and is hoping to be enrolled in a trial of a novel drug.;

Magic minerals

Asbestos is a generic term used to describe six naturally occurring minerals made up of thin fibrous crystals. Chrysotile, or white asbestos, is the only form still in use, and accounts for 95 per cent of the asbestos mined and used by humans historically. Its curly fibres make it more flexible than a family of five other forms known as the amphiboles – amosite (brown asbestos), crocidolite (blue asbestos), anthophyllite, tremolite and actinolite – which all consist of needle-like fibres.

The characteristics of asbestos – strong, lightweight and heat-resistant – and the fact it could be split into fibres, mixed with other materials and easily shaped meant that use of the mineral soon caught on. Large-scale mining began in the second half of the 19th century in the USA, Italy and Canada, and during the 20th century it was incorporated into a huge variety of products, especially building materials such as concrete, pipes, cement, bricks, tiles and insulation for buildings and ships. It was also used in car parts, protective clothing, mattresses and even cigarette filters. The industry significantly expanded during both World Wars.

You may not have to look hard to find asbestos where you live or work. Many buildings still have asbestos-based components, including pipe insulation, decorative coatings, ceiling boards, fireproofing panels, window in-fill panels and cold water tanks.

Research into precisely how asbestos causes mesothelioma and other forms of lung cancer is ongoing. The fibres are so small that most can only be seen under a microscope. Billions can be inhaled in a single day with no immediate effect, but longer-term the consequences can be deadly.

The fibres can become lodged in the lining of organs such as the lungs, causing damage that interrupts the normal cell cycle, leading to uncontrollable cell division and tumour growth. Asbestos is also linked to changes in the membranes surrounding the lungs – the pleura – including pleural thickening, the formation of scar tissue (plaques), and abnormal collections of fluid (pleural effusion).

“There is absolutely no doubt that all kinds [of asbestos] can give rise to asbestosis, lung cancer and mesothelioma,” says Paul Cullinan, Professor of Occupational and Environmental Respiratory Disease at the National Heart and Lung Institute, Imperial College London. “It’s probably the case that white asbestos is less toxic in respect to mesothelioma than the amphiboles. The industry tries to argue that you can take precautions so that white asbestos can be used safely, but in practice, in the real world, that is not what is going to happen.”

This is the firm scientific consensus. But not everyone agrees.

A town named Asbestos

Two hours’ drive east of Montréal, Canada, opposite a meat-packing factory, a blue-and-white advertising hoarding stands on a piece of scrubland. It reads: “Batir l’avenir ici: Terrains industriels a vendre” (“Build the future here: Industrial land for sale”). There are many similar signs in the town of Asbestos.;

Such efforts to attract new businesses and jobs gained greater urgency in the summer of 2012. It was then that the town’s Jeffrey Mine, a hole in the ground measuring a little over a mile across (and into which the Eiffel Tower could fit), ceased production of white asbestos after 130 years.;

Named after its most notable export, the town once met approximately three-quarters of the world’s demand for asbestos. Attempts to diversify have had limited success, and jobs are thin on the ground. Halfway between the advertising hoarding and the mine is the town’s newest building, a cancer clinic. Most locals, however, appear to believe the industry’s claims that white asbestos can be safely used.

“They believe that if you have cancer, it is because you smoked,” says Dr Jessica van Horssen, an environmental historian at York University, Toronto, who has a forthcoming book on the relationship of the town’s population to their environment, and how it affects their identity and attitudes. “The view is that asbestos can be handled safely now. The industry covered things up and it’s as if the people learnt that this is what you are supposed to do. You must say it’s not so bad, that it saves more lives than it kills, and if we say it’s okay enough times people will believe it.”

Many outsiders have suggested the town is on borrowed time. The mine only survived following the collapse of the global industry in the 1980s thanks to government subsidies. Its population, now around 6,000 (down from 10,000 in the 1970s), is ageing as well as shrinking. There were once ten primary schools, now there are two. Many homes are boarded up.;

“It’s a bit of a ghost town,” says van Horssen. “There are few people out on the streets. When outsiders walk around, the locals will turn and look, and if you go into a local café everything goes quiet.” In 2006, the Mayor, Jean-Philippe Bachand, proposed that the town change its name, as those trying to attract new businesses reported it was an obstacle. One of his suggested alternatives was Phoenix. The population voted against the name change, then voted Bachand out of office.

Where once their fathers and grandfathers were hailed as war heroes for providing the asbestos to make uniforms, buildings and military vehicles fire-resistant, now the town’s inhabitants are branded international pariahs, says van Horssen. Little wonder that they don’t take kindly to the criticisms of outsiders, she adds.

“Many of the people who campaign against and write about asbestos have never visited a mining community. There is also a class issue of working-class inhabitants being told by educated uppers what is best for them. Some of it can be quite patronising and their response is ‘You’ve never been here and you don’t know me’. Generations have lived and died with this mineral. It’s who they are, and they can’t be ashamed of it.”

Birth of an industry

Some 3,000 miles from the hoarding in Quebec is another sign: “Asbestos: Once a magic mineral, but always a killer dust”. The plaque is on the ground opposite the town hall in Rochdale, north-west England – to many, the birthplace of the modern asbestos industry. The Turner Brothers Asbestos Company, which later changed its name to Turner and Newall (T&N), began weaving asbestos cloth in the town in 1879.

Within just 20 years, the Chief Inspector of Factories for Britain had highlighted that working with asbestos could cause lung injuries and called for ventilation of workplaces. The first death officially attributed to occupational exposure to asbestos, however, was that of Nellie Kershaw, a yarn spinner who worked at the Turner Brothers factory in Rochdale for almost five years before her death in 1924, at the age of 33. She had been signed off work two years earlier, diagnosed with “asbestos poisoning”. The company refused Kershaw’s request for compensation and later declined to contribute to her funeral costs. Her remains lie in an unmarked grave.

“One of the first things that strikes you when you look at asbestos is just how long ago it was discovered to be toxic,” says Geoffrey Tweedale, former Professor of Business History at Manchester Metropolitan University. Following a US legal case in 1995, Tweedale and fellow historian David Jeremy obtained a copy of the T&N company archive. They studied the almost one million documents and Tweedale went on to co-write two books on asbestos and the industry.

Raw asbestos in a disused asbestos factory in Caligny, northwestern France. Photo: Getty

What this extraordinary collection of internal papers showed was how much some senior figures in the asbestos industry knew about the damage they were causing to their workers, and how their response was to launch a campaign of scientific concealment and distortion, and public misinformation that dates back over 80 years and continues today.

In 1927 a doctor called Ian Grieve wrote a detailed study of the health of workers at the J W Roberts asbestos textile plant in Leeds. He used X-rays to confirm his evaluation that the hand-beating of asbestos mattresses for locomotives (to remove lumps) could cause asbestosis within five years. A government enquiry set up a year later found that a quarter of workers with five or more years of experience in asbestos textile factories had fibrosis, rising to half of those who had worked in the industry for ten years. Regulations on dust control, medical surveillance and compensation were introduced in Britain in 1931.

Two years after Grieve’s findings, executives from US asbestos companies Johns-Mansville (the owners of the Jeffrey Mine) and Raybestos (a manufacturer of automotive parts) asked Metlife, the country’s largest insurer, to investigate whether the mineral was an occupational hazard for workers at five textile mills. It was found that only 17 of 108 male workers studied and three of the 18 women were free of asbestosis. These results were not published.

Nor were those from a 1930 study by physician Dr George Slade, who found that most of the workers at the T&N-operated New Amianthus asbestos mine in Eastern Transvaal, South Africa, suffered shortness of breath and weight loss and had asbestosis. Evidence of high levels of asbestosis and other health problems among Johns-Manville workers in Asbestos and the nearby Thetford Mine was similarly covered up. Contrary to the evidence on their desks, asbestos company executives claimed workers in the Canadian mines showed no signs of asbestos-related diseases, and that any ill health was the result of conditions in factories further down the production line.

Industry-backed research carried out at the Saranac Laboratory in New York State in 1940, showing that 80 per cent of mice that inhaled asbestos fibres developed pulmonary cancer, was not published. Before and during World War II, Johns-Manville company doctors closely monitored the health of Jeffrey Mine workers, telling them they were sick because they smoked or made other poor lifestyle choices, while telling their bosses that asbestos was the real culprit.

During the 1940s and 1950s, when miners died, their lungs were secretly autopsied and smuggled to the Saranac to be studied. The findings, that asbestos fibres caused cancer, were suppressed. “The whole community was treated as a giant laboratory, with the miners acting as lab mice,” says van Horssen. “History shows working-class people and other marginalised populations have often been used in this way, as guinea pigs.”

The epidemiologist Professor Richard Doll, famous for his work linking smoking to lung cancer, published a study showing that Rochdale textile workers were at elevated risk of lung cancer in 1955. Yet even the growing evidence emerging during the 1950s and early 1960s still had little impact on the asbestos industry. Between 1960 and 1980, production entered its fastest period of growth. A US Geological Survey study found that 80 per cent of world production during the 20th century came after 1960, by which time it was clear that asbestos caused lung cancers such as mesothelioma.

Manufacturing uncertainty

As Tweedale and co-author Jock McCulloch, Professor of History at the Royal Melbourne Institute of Technology, explain in their 2008 book Defending the Indefensible, each time the evidence showing that industry lobbyists were wrong became overwhelming, they just changed tack.

When independent research began to show irrefutable evidence of hazards, the industry began to argue that disease was only common in older workers because conditions in the past had been poor, and that new measures taken to control dust inhalation meant safe production was possible.

In 1960 a scientist named J C Wagner identified 33 cases of mesothelioma in South Africans living near an asbestos mine. Crucially, most did not work at the mine. In 1964, New York physician Irving J Selikoff found high levels of asbestosis, lung cancer and mesothelioma in insulation workers. The industry shifted position again, now arguing that while forms such as blue and brown asbestos were responsible for diseases, white asbestos from Canada could be safely used.

Scientists who published inconvenient results were vilified and harassed. Following the publication of Selikoff’s findings, for example, Johns-Manville began recording and circulating his talks to executives and company medical researchers. Internal documents with titles such as ‘Discredit Selikoff’, released years later, reveal the lengths they went to in seeking to undermine him and his work.

An array of organisations combining industry research with public relations was established across the world, using names such as the Asbestos Research Council and the Asbestos Information Committee. The Quebec asbestos mining industry funded the setting-up of the Institute of Occupational & Environmental Health at McGill University. Any natural gaps or uncertainties in the research that showed asbestos caused disease were highlighted and exploited in an early version of the now-prevalent ‘manufactured uncertainty’ tactic. If these strategies sound familiar, there's a good reason: the industry was being advised by a US public relations company that had previously defended big tobacco.

“The first thing I noticed, looking at the documents, was that the asbestos industry used Hill & Knowlton, the same public relations firm that the tobacco industry were using,” says Tweedale. “There are clear parallels in the way they approached their problems.”

The redefinition of white asbestos as an entirely different and safer mineral has formed the core of the industry’s defence from the 1960s to the present day. The Asbestos Institute, an international umbrella industry organisation, changed its name to the Chrysotile Institute in 2004. The industry has carefully selected the research it has funded in order to serve its interests. Using normal gaps in scientific knowledge about precisely how asbestos causes disease and about the relative toxicity of the different forms, it has in many places successfully undermined the truth that all asbestos is potentially dangerous in a world where damage and poor monitoring of building components is inevitable.

Because the asbestos industry encompassed so many different types of job, trade unions were slow to present a united front to defend their members on the issue. The social position of the majority of victims also helps explain why it took so long for countries to introduce legislation on asbestos use.

“Asbestos-related diseases disproportionately affect working-class people in semi-skilled or unskilled jobs, their relatives and others who lived near the factories,” says Tweedale. “There was this tremendous death toll but it didn’t have big repercussions because they were ‘just working-class people’."

Bish agrees. “In manufacturing industry, there have always been casualties in the workforce,” he says. “If it had affected the lives of politicians and high-living people rather than just the general working public, I think things would have been different. It would have been banned much sooner.”

The views of the people in the town of Asbestos are echoed elsewhere in Canada, right to the highest levels of public life. Trade unions in Quebec have aggressively supported the industry. Canadian law, in backing “controlled use” of asbestos, stands in opposition to calls from the Canadian Medical Association, the Canadian Cancer Society and the Canadian Public Health Association for a ban.

Just as in the west London hospital and other workplaces and homes throughout the UK, asbestos components are being ripped out of the ceilings and walls of many Canadian public buildings. However, they are still being installed in others. In 2011, asbestos cement drainage pipes were fitted in the new McGill University Health Centre in Montréal.

In September 2012, things in Canada changed. The incoming government of Quebec – the only Canadian province that was still producing asbestos – kept its promise to cancel a CAN$58 million loan that would have reopened the Jeffrey Mine. Announcing the plans, the then Industry Minister Christian Paradis said that the federal government would spend up to CAN$50 million on diversifying the economy in asbestos-mining areas. He also announced that Canada would no longer oppose adding white asbestos to the UN Rotterdam Convention, a list of hazardous substances to which trade restrictions apply.

While Quebec’s actions received some praise from anti-asbestos campaigners, many feel that the government of Canada has much more to do.

“The Canadian government does not support the science on asbestos,” says leading anti-asbestos campaigner Kathleen Ruff. “It has not banned asbestos in Canada. We still import thousands of products that contain asbestos. Those in government oppose the views of the whole Canadian and world scientific community,” says Ruff. “They are not stupid, so I can only conclude it’s cynically done for political expediency.

“The industry has hired scientists in the same way the tobacco industry did, who claim the risks are not there,” says Ruff. “Their research has been used to delay action to protect people from asbestos and to prevent it being banned. Many have been exposed and have died as a result. There’s no doubt it’s been very lucrative for those scientists who have gone down that path. But it’s also a complete betrayal of scientific independence and integrity, and of their responsibility as human beings not to harm others.”

New markets

In another tobacco industry parallel, the asbestos industry explored new markets as compensation claims and media criticism snowballed and governments tightened regulations. During the 1970s and 1980s, some large asbestos companies moved manufacture of particularly hazardous products to lower-income countries.

Funded by the Canadian and Quebec governments and mining companies, what is now the Chrysotile Institute sent delegations to Asia, Latin America and Africa to claim the mineral could be used safely. “When the UK and other developed countries stopped using it, the industry reinvented itself, creating a whole new geography of victims in developing countries,” says Ruff.

From a peak of 5 million tonnes around 1980, asbestos production fell to 2 million tonnes around two decades ago, and has hovered around that mark ever since. Russia accounts for half of world production, with the other large producers China, Brazil and Kazakhstan. As of April 2013, bans on all types of asbestos use were in place in 54 countries – fewer than the number in which it is still used. China and India consume the most, together taking almost half of world production. Thailand, Indonesia, Sri Lanka, Brazil and Russia use significant amounts.

In 2013, an attempt to add white asbestos to the Rotterdam Convention was blocked by Russia, Kazakhstan, Ukraine, Kyrgyzstan, Zimbabwe, India and Vietnam. Supporters of the move said it would have led to improved labelling, handling and safety regulations, and saved thousands of lives. Opponents said it would increase shipping and insurance costs.

The World Health Organization estimates that 107,000 people die every year as a result of occupational exposure to asbestos. In the UK, the Health and Safety Executive puts the figure at about 4,700: in 2011, 2,300 British people died from mesothelioma, 2,000 from other related lung cancers and 400 from asbestosis. Tradespeople are at particularly high risk.

Attempts to calculate likely future deaths have produced widely varying results over the years, partly because the greatest risks of developing mesothelioma come between 30 and 50 years after exposure. A 2010 study predicted that 61,000 men in the UK will die of mesothelioma between 2007 and 2050 – compared with 30,000 between 1968 and 2007. The peak year for mortality was predicted to be 2016.;

While most cases occur among those who work directly with materials containing asbestos, others become sick through more casual environmental exposure. In 2004 it was reported that hospital workers and school teachers ranked fourth and eighth respectively in a list of the most frequently cited occupations on mesothelioma death certificates, and that a quarter of US deaths from the disease occurred in those who had not worked directly with it.

Some healthcare workers report that this proportion may be growing. Liz Darlison is a consultant nurse at University Hospitals of Leicester NHS Trust and a founder of Mesothelioma UK, which provides information and support for patients.

“It is still predominantly carpenters, joiners, laggers,” says Darlison. “But those of us who work with this disease are fearful because increasingly we are seeing more women and more people who've had casual exposure such as teachers, doctors, nurses, secretaries, and people who have sat of the knee of a dad who has worked with asbestos.”

No cure

Winston and Jennifer Bish still live in the pretty, well-kept home he built for them and their children in the 1970s. He is comfortable there and had hoped it would be where he would spend many years of happy, healthy retirement. Perhaps he’ll be lucky, but it’s a vision that could be robbed from him any day.

Bish, though, is much more concerned that others are informed of the dangers, so they do not end up in his shoes, than with blaming anyone for his condition. “I just hope that people are made more aware of the problems linked to asbestos. It’s still there in schools, offices and housing, and anyone who does DIY can come into contact with it. It can lay dormant for 40 to 50 years, and there’s no cure.”

Jennifer and Winston Bish shot by Ben Gilbert/Wellcome Trust

“I enjoyed working in the building industry – very much so – but if I’d known the risks back then I wouldn't have gone into it,” he says. “I realise now it was like playing Russian roulette. Some take the bullet, others don’t. I was one of the unlucky ones.”

In west London, meanwhile, a man carefully tapes up another red bag containing wet asbestos, then places it into a clear bag, which he also tapes up. The contractors remove their orange overalls, place them in a bag for disposal, then hoover each other down. Leaving the ‘dirty end’ of the three-stage airlock through plastic sheeting, they enter the middle stage, where they squirt water over their hair and masks. In the final ‘clean end’, they put on new overalls. The asbestos is taken away, destined for a hazardous waste landfill in Ipswich.

Their job is far from finished. The team will continue working at the hospital over three summers, as work can only be carried out when the heating is off. The contract for this work is worth over £400,000.

Given that asbestos could be present in any building refurbished or built before 2000 in the UK – homes, hospitals, schools, offices – it’s likely that the specialist removal companies will be busy for years to come. So too will be the clinics and hospitals dealing with the human casualties of the appalling legacy of a mineral called asbestos.

Read the full article. This article was commissioned by Mosaic, a new digital publication from the Wellcome Trust dedicated to exploring all strands of the science of life. It is reproduced under a Creative Commons Attribution 4.0 International Licence.

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The Pill pushback

The contraceptive pill helped liberate women when it arrived in the UK in the 1960s. Now, spurred by experiences shared online and a spate of new fertility apps, many are turning their backs on it.  

Six weeks before her final exams, Claire* was looking forward to the end of university and a summer of travelling. By the time the first exam arrived, something had drastically changed. “I called my mum sobbing and told her there was no way I could take the exams,” she tells me now, several years later. “I hadn’t done even an hour's worth of revision. I just ate and slept and cried without understanding why.”

Claire’s GP at university diagnosed stress, yet on her planned trips abroad, nothing improved. “I was plagued by panic attacks. I felt like the world was crashing down on me.” On her return home, she visitedher local GP, who, unlike the previous doctor, immediately asked if she was on contraception. It was then that Claire made the link: a month and a half before her exams, she was first prescribed Cerazette, a common progesterone-only contraceptive pill.

The GP explained that depression is a known side effect of Cerazette, and she had seen it in other patients before. “She told me to stop taking it immediately. Within a week, the numbness began to lift and I felt my personality coming back. I felt hope for the first time in months.”

Claire is off the pill now, and in the past, this would have been the end of the story – especially since her GP “refused” to report her side effects to the yellow card scheme, which is used to collect information on medication’s unwelcome side effects.

But over the past decade or so, those who have experienced side effects – I’ll refer to “women” from here for clarity, but these issues can affect anyone with a uterus – like Claire have begun sharing their tales of contraceptive woe across forums, blogs, and social media.

#MyPillStory, a hashtag begun earlier this month, aggregated Twitter users’ tales of pill disaster, from blood clots to personality changes. It makes for spine-tingling reading – especially for anyone who pops their own pill daily. Depression, anxiety, and an affected sex drive crop up in scores of the posts, while handfuls of woman say they experienced blood clots, strokes, acne, swollen legs, chest pains, nausea… the list goes on.

Of course, the problem with this type of “data” is that, well, it isn’t. The medical profession’s denial of women’s experiences is usually badly handled, is often unjust and unfounded, but can also be correct. A medication you take for years of your life will, necessarily, coincide with other health problems. It’s incredibly difficult to establish causation in many of these cases.

I fantasise about stopping the Pill and having normal periods

Meanwhile, anecdotal stories can cause panics, and more problems than they solve. A scare around blood clots and pills containing Gestodene and Desogestrel in 1995 led to an estimated £21m cost in maternity care and £46m in abortion provision, as many frightened women went off contraception altogether. As a result, women’s use of oral contraception fell from 40 per cent to 27 per cent between 1995 and 1997.

Sarah Kipps, a nurse and contraception specialist with the National Union of Students, tells me there’s a danger that some women assume that generic “symptoms of life” are pill-related: “If you ask people on no medication what their symptoms are, they’ll have tiredness and headaches. This mirrors what some people say about the pill.” This is backed up by studies which show that around a quarter of study participants who have taken a placebo report side effects.

And yet women who do experience side effects are simply told to change their medication – which may explain why social media as a platform to share their stories has proved so attractive. These side effects scare women off hormonal contraception altogether, which, whether wise or unwise, is as much a product of an under-resourced sexual health system that tends to dismiss female pain as the health problems themselves.

I spoke to 20 women in depth about coming off the pill, and the choices they made afterwards. They added to the mix of stories about contraception clashing badly with anti-depressants, poor advice from doctors, unwanted pregnancies after coming off the pill, and an endless quest to find a method of contraception that actually works. The idea of choice was a key element: in a society increasingly concerned with wellness and what we put in our bodies, a daily dose of hormones begins to look less and less attractive.

As one woman told me, “As silly as I know this would be, I fantasise about stopping the pill and having normal periods, like a character in a Philippa Gregory nove.” Now, women can opt for different types of pills with different doses of hormones (WebMD has a good rundown), hormonal and non-hormonal coils which are inserted into the cervix, or injections. You can also, of course, opt for nothing at all.

***

Data shows that the use of oral contraceptives as a percentage of contraceptive methods has remained largely stable over the past decade. Tellingly, though, figures from sexual and reproductive health services also show a sharp upturn in Long Action Reversible Contraception, such as coils and implants, since 2010. Arm implants contain the lowest doses of hormones available, while non-hormonal coils are also available. The data shows the contraceptive choices of women who have visited sexual and reproductive health services (not including GP surgeries or pharmacies) during a certain year, so while they show trends, they don't represent the whole UK population of women. 

Lois is one of those datapoints. While at university she experience “horrific migraines”, a common side effect of high-oestrogen birth controls she was taking. As a result, she opted for the non-hormonal coil, a T-shaped device inserted into the uterus: “It’s good for ten years, and the lack of hormones meant that I no longer got migraines from my birth control. I don’t ever have to think about it, unless I’m telling someone about how great it is.”

Perhaps the most interesting figure of all in this data comes under the heading “natural family planning” – or, in common parlance, unsafe sex. It hasnt topped 1 per cent over the past decade, but the numbers have increased over tenfold, from 500 women who visited sexual and reproductive health services in 2004/5 to 7,700 in 2014/15. (It’s worth noting that data collection methods have changed slightly over this period, which could partially account for the change.)

In the past, this decision may have been borne of religious convictions, but my interviewees suggest that secular women are using this method too. They are helped by fertility apps, which allow women to estimate the most fertile days of their cycle and take precautions accordingly.

Sarah, a sex blogger, quit the pill after reading a blogpost by a woman who, like Claire, escaped a cycle of depression and anxiety only when she went pill-free. She had noticed a decreased sex drive, and wanted to know what life without contraceptive medication would be like.

“I honestly didn’t realise how bad I felt until I started feeling better,” Sarah tells me now. “I was feeling depressed, but I never thought it had to do with the pill. Neither my therapist nor my psychiatrist ever brought it up.” Now, Claire uses condoms, but also a period monitoring app, Clue, so she knows to avoid penetrative sex on her most fertile days.

Natural Cycles is another such app that uses temperature measurements to predict fertility and marks days red, yellow or green depending on how safe it is to have sex. It recently hit headlines when a study claimed it is as effective as the pill when used correctly, based on a study of 4,023 Swedish women. Professor Kristina Gemzell, one of the authors of the study, said: “More and more women, especially in the age group of 20-30, tend to abstain from hormonal contraception and desire a hormone-free alternative. It is important to increase choice among contraceptives for women and inform them about their pros and cons.”

There's a complacency around contraception

Unsurprisingly, these claims, and the publicity around them, are worrying for those working in sexual health and family planning. Dawn Stacey, a contraceptive expert and professor, tells me that she would guess the app is “not as effective as the pill”. This is based on the fact that the app suggests users log their temperature to monitor fertility, while nurses use a minimum of three indicators to predict fertility, including the consistancy of the cervical mucus and position of the cervix. Fertility planning was once taught in clinics, but is now thought of as too complex and risky - nurses would monitor a woman's fertility for two or three months before hazarding a guess at a pattern.

“Plus, there are other factors that could impact determining your fertility,” Stacey adds. “Many women don't have regular cycles until their mid-20s and ovulation can be impacted by stress, lack of sleep, or being sick. it doesn't look like the app takes any of that into consideration.”

Sarah Kipps, a contraceptive nurse, adds that this type of natural planning “involves a lot of abstinence – you could be fertile for five days in a month”. In her eyes, "there's a kind of complacency around contraception” as the pill’s introduction in the 1960s becomes a distant memory. 

“People come in and see us, and they want to be natural. But natural means pregnancy. If you don’t get on with the pill, come and have a chat in the clinic – there are lots of other alternatives. If you don’t want to have children, you have to defeat biology. The pill defeated biology, but now there’s a backlash against it.” 

Dr Raoul Scherwitzl, co-founder of the Natural Cycles app, says that temperature is “enough…to confirm that ovulation has happened” and that the app responds to irregular cycles, adding extra "red days" to "cover the uncertainty around the irregularities". 

Despite the risk, some women see this “natural” contraception as a way of reclaiming control. This seems especially common among women who went on the pill early and are now questioning its effects on their bodies.

Yara went on the pill aged 15, “because I went to the doctor with an irregular period. Looking back I'm pretty sure it's because I was underweight, but the doctor didn't spot that and put me on the pill. After that I felt pressured by boyfriends.” Within the past few years she went off the pill, then got an implant, and now uses a combination of the Clue app and condoms. “Clue is awesome,” she says. “It makes me feel in control of my body and tells me when I’m fertile. I’d be open to using it alone, except for my concerns about STIs.” Since coming off the pill, she has had a “massive mood boost”.

***

One woman told me she saw the pill as “the lesser of several evils”, which is probably a good expression of most women’s view of their choice of contraception.

There’s an ingrained, insurmountable biological unfairness throughout the contraception debate, since women, even as we near an age of male pills and longer-term contraceptive options for men, bear the brunt of the decisions, health effects and stress around contraception.

Marie* went off the pill following dramatic mood swings, but now, her new boyfriend is “a bit less forgiving” when it comes to using condoms. “He’s really keen that I use something else, so I’m currently looking.”

Zoe* started out using Cerazette in 2012, which she says sent her “a bit loopy”, tried the coil, which was “incredibly painful”, then returned to the pill. Her boyfriend was unwilling to use condoms, and throughout, “I certainly felt that finding the right method of contraception was in my hands only, not a shared endeavour.”

These long, winding medical histories, reeled off at a moment’s notice, are common among women who use contraception. In this sense, to be fertile is a health condition which many women struggle with for much of their lives.

Meanwhile, society contains a frustrating contradiction. Women’s bodies are mythologised and sexualised, and yet discussion of their intimate workings are taboo in many forums. In 2010, a student at Dartmouth College in the US handed out nearly 2,000 hand mirrors to women so they could see their own genitalia, perhaps for the first time. A student paper called her campaign “disrespectful” to women of faith – and yet one has to wonder what motivates a religion to hide a woman's genitalia from its owner. Other students, meanwhile, saw the mirrors as an “in-your-face show of sexual profligacy”. 

Meanwhile, we ask women to make decisions about their uteruses which could affect their mental and physical health for years to come, based on a dearth of support and information which begins in the schoolroom and continues in the doctor’s office. “I was just shown some leaflets” was a common refrain among the women I spoke to. The online movement around contraception is a sign that advice and guidance serves aren’t working offline. 

So what’s the solution? Perhaps the most positive story I heard throughout this research came at the conclusion of one of the most distressing. Lisa*, whose pill interfered with her anti-depressants, eventually decided to get a coil. “My GP, who I don’t think had ever put in a coil before, tried to install a coil and did it wrong. It was one of the most traumatic medical experiences I have had – even as someone who lived in and out of hospital for two years for other reasons.”

She then found the Margaret Pyke Centre, a contraceptive and reproductive clinic in King’s Cross. The centre offers one-on-one appointments where women can discuss their decision, and Lisa says they “took me through all my options, with models [of the coil] which i could play with and loads of proper information”.

She opted for the coil again, which surprised me given her previous experiences – even a standard coil insertion procedure can range from uncomfortable to painful. So what changed her mind? “If you go to Margaret Pyke on your own for the operation, there is quite literally someone there to hold your hand.”

In an age of shrinking health budgets and ever-more confused messaging around women’s bodies, safe contraception chosen by women with access to all the information should be a right, not a privilege. Meanwhile, continued research into the pill's side effects should be a much higher priority, as the hormonal dosages may be lower, but the drugs have developed little since the 1960s. The male contraceptive pill has been hampered in its development by the fact that 63 per cent of men say they wouldn't take it if it caused side effects like weight gain and acne; side effects which most women would consider par for the course, compared to the far worse effects some experience.

The pill and the general normalisation of contraception in the UK helped shrink families, ratchet up gender equality, and increase prosperity across the second half of the twentieth century. Yet since then, progress seems to have slowed to a crawl.

“The lack of research into contraception’s side effects is unreal,” Yara says. “But it’s such a fundamental part of being a human with a uterus. To be able to not be pregnant.”

*Most names have been changed.

For advice on contraception, try your local GP surgery, the Family Planning Association, or specialist sexual health and contraceptive services, a list of which can be found here

You can join the fight to save the Margaret Pyke Centre here

Barbara Speed is a technology and digital culture writer at the New Statesman and a staff writer at CityMetric.