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Why does the medical establishment fail to take women in pain seriously?

Women with mesh implants have been suffering for years. And it's not the only time they have been ignored. 

Claire Cooper’s voice wavered as she told the BBC interviewer that she had thought of suicide, after her mesh implant left her in life-long debilitating pain. “I lost my womb for no reason”, she said, describing the hysterectomy to which she resorted in a desperate attempt to end her pain. She is not alone, but for years she was denied the knowledge that she was just one in a large group of patients whose mesh implants had terribly malfunctioned.

Trans-vaginal mesh is a kind of permanent “tape” inserted into the body to treat stress urinary incontinence and to prevent pelvic organ prolapse, both of which can occur following childbirth. But for some patients, this is a solution in name only. For years now, these patients – predominantly women – have been experiencing intense pain due to the implant shifting, and scraping their insides. But they struggled to be taken seriously.

The mesh implants has become this month's surgical scandal, after affected women decided to sue. But it should really have been the focus of so much attention three years ago, when former Scottish Health Secretary Alex Neil called for a suspension of mesh procedures by NHS Scotland and an inquiry into their risks and benefits. Or six years ago, in 2011, when the US Food and Drug Administration revealed that the mesh was unsafe. Or at any point when it became public knowledge that people were becoming disabled and dying as a result of their surgery.

When Cooper complained about the pain, a GP told her she was imagining it. Likewise, the interim report requested by the Scottish government found the medical establishment had not believed some of the recipients who experienced adverse effects. 

This is not a rare phenomenon when it comes to women's health. Their health problems are repeatedly deprioritised, until they are labelled “hysterical” for calling for them to be addressed. As Joe Fassler documented for The Atlantic, when his wife's medical problem was undiagnosed for hours, he began to detect a certain sexism in the way she was treated:

“Why”, I kept asking myself, when reading his piece, “are they assuming that she doesn’t know how much pain she’s feeling? Why is the expectation that she’s frenzied for no real reason? Does this happen to a lot of women?”

This is not just a journalist's account. The legal study The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain found that women report more severe levels of pain, more frequent incidences of pain, and pain of longer duration than men, but are nonetheless treated for pain less aggressively. 

An extreme example is “Yentl Syndrome”. This is the fact that half of US women are likely to experience cardiovascular disease and exhibit different symptoms to men, because male symptoms are taught as ungendered, many women die following misdiagnosis. More often than should be acceptable, female pain is treated as irrelevant or counterfeit.

In another significant case, when the news broke that the most common hormonal birth control pill is heavily linked to a lower quality of life, many uterus-owning users were unsurprised. After all, they had been observing these symptoms for years. Social media movements, such as #MyPillStory, had long been born of the frustration that medical experts weren’t doing enough to examine or counter the negative side effects. Even after randomised trials were conducted and statements were released, nothing was officially changed.

Men could of course shoulder the burden of birth control pills - there has been research over the years into one. But too many men are unwilling to swallow the side effects. A Cosmopolitan survey found that 63 per cent of men would not consider using a form of birth control that could result in acne or weight gain. That’s 2 per cent more than the number who said that they would reject the option of having an annual testicular injection. So if we’re taking men who are afraid of much lesser symptoms than those experienced by women seriously, why is it that women are continually overlooked by health professionals? 

These double standards mean that while men are treated with kid gloves, women’s reactions to drugs are used to alter recommended dosages post-hoc. Medical trials are intended to unearth any potential issues prior to prescription, before the dangers arise. But the disproportionate lack of focus on women’s health issues has historically extended to medical testing.

In the US, from 1977 to 1993, there was a ban on “premenopausal female[s] capable of becoming pregnant” participating in medical trials. This was only overturned when Congress passed the National Institutes of Health (NIH) Revitalisation Act, which required all government funded gender-neutral clinical trials to feature female test subjects. However, it was not until 2014 that the National Institutes of Health decreed that both male and female animals must be used in preclinical studies.

Women’s exclusion from clinical studies has traditionally occurred for a number of reasons. A major problem has been the wrongful assumption that biologically women aren’t all that different from men, except for menstruation. Yet this does not take into account different hormone cycles, and recent studies have revealed that this is demonstrably untrue. In reality, sex is a factor in one’s biological response to both illness and treatment, but this is not as dependent on the menstrual cycle as previously imagined.

Even with evidence of their suffering, women are often ignored. The UK Medicines and Healthcare Regulatory Agency (MHRA) released data for 2012-2017 that shows that 1,049 incidents had occurred as a result of mesh surgery, but said that this did not necessarily provide evidence that any device should be discontinued.

Yes, this may be true. Utilitarian thinking dictates that we look at the overall picture to decide whether the implants do more harm than good. However, when so many people are negatively impacted by the mesh, it prompts the question: Why are alternatives not being looked into more urgently?

The inquiry into the mesh scandal is two years past its deadline, and its chairperson recently stepped down. If this isn’t evidence that the massive medical negligence case is being neglected then what is?

Once again, the biggest maker of the problematic implants is Johnson&Johnson, who have previously been in trouble for their faulty artificial hips and – along with the NHS – are currently being sued by over 800 mesh implant recipients in the UK alone. In the US, over 100,000 women are suing for their painful implants. A leaked email from the company suggested that the company was already aware of the damage that the implants were causing (Johnson&Johnson said the email was taken out of context).

In the case of the mesh implants slicing through vaginas “like a cheese-wire”, whether or not the manufacturers were aware of the dangers posed by their product seems almost irrelevant. Individual doctors have been dealing with complaints of chronic or debilitating pain following mesh insertions for some time. Many of them just have not reported the issues that they have seen to the MHRA’s Yellow Card scheme for identifying flawed medical devices.

Shona Robison, the Scottish Cabinet Secretary for Health and Sport, asked why the mesh recipients had been forced to campaign for their distress to be acknowledged and investigated. I would like to second her question. The mesh problem seems to be symptomatic of a larger issue in medical care – the assumption that women should be able to handle unnecessary amounts of pain without kicking up a fuss. It's time that the medical establishment started listening instead. 

 

Anjuli R. K. Shere is a 2016/17 Wellcome Scholar and science intern at the New Statesman

Photo: Getty
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The EU’s willingness to take on Google shows just how stupid Brexit is

Outside the union the UK will be in a far weaker position to stand up for its citizens.

Google’s record €2.4bn (£2.12bn) fine for breaching European competition rules is an eye-catching example of the EU taking on the Silicon Valley giants. It is also just one part of a larger battle to get to grips with the influence of US-based web firms.

From fake news to tax, the European Commission has taken the lead in investigating and, in this instance, sanctioning, the likes of Google, Facebook, Apple and Amazon for practices it believes are either anti-competitive for European business or detrimental to the lives of its citizens.

Only in May the commission fined Facebook €110m for providing misleading information about its takeover of WhatsApp. In January, it issued a warning to Facebook over its role in spreading fake news. Last summer, it ordered Apple to pay an extra €13bn in tax it claims should have been paid in Ireland (the Irish government had offered a tax break). Now Google has been hit for favouring its own price comparison services in its search results. In other words, consumers who used Google to find the best price for a product across the internet were in fact being gently nudged towards the search engine giant's own comparison website.

As European Competition Commissioner Margrethe Vestager put it:

"Google has come up with many innovative products and services that have made a difference to our lives. That's a good thing. But Google's strategy for its comparison shopping service wasn't just about attracting customers by making its product better than those of its rivals. Instead, Google abused its market dominance as a search engine by promoting its own comparison shopping service in its search results, and demoting those of competitors.

"What Google has done is illegal under EU antitrust rules. It denied other companies the chance to compete on the merits and to innovate. And most importantly, it denied European consumers a genuine choice of services and the full benefits of innovation."

The border-busting power of these mostly US-based digital companies is increasingly defining how people across Europe and the rest of the world live their lives. It is for the most part hugely beneficial for the people who use their services, but the EU understandably wants to make sure it has some control over them.

This isn't about beating up on the tech companies. They are profit-maximising entities that have their own goals and agendas, and that's perfectly fine. But it's vital to to have a democratic entity that can represent the needs of its citizens. So far the EU has proved the only organisation with both the will and strength to do so.

The US Federal Communications Commission could also do more to provide a check on their power, but has rarely shown the determination to do so. And this is unlikely to change under Donald Trump - the US Congress recently voted to block proposed FCC rules on telecoms companies selling user data.

Other countries such as China have resisted the influence of the internet giants, but primarily by simply cutting off their access and relying on home-grown alternatives it can control better.  

And so it has fallen to the EU to fight to ensure that its citizens get the benefits of the digital revolution without handing complete control over our online lives to companies based far away.

It's a battle that the UK has never seemed especially keen on, and one it will be effectively retreat from when it leaves the EU.

Of course the UK government is likely to continue ramping up rhetoric on issues such as encryption, fake news and the dissemination of extremist views.

But after Brexit, its bargaining power will be weak, especially if the priority becomes bringing in foreign investment to counteract the impact Brexit will have on our finances. Unlike Ireland, we will not be told that offering huge tax breaks broke state aid rules. But if so much economic activity relies on their presence will our MPs and own regulatory bodies decide to stand up for the privacy rights of UK citizens?

As with trade, when it comes to dealing with large transnational challenges posed by the web, it is far better to be part of a large bloc speaking as one than a lone voice.

Companies such as Google and Facebook owe much of their success and power to their ability to easily transcend borders. It is unsurprising that the only democratic institution prepared and equipped to moderate that power is also built across borders.

After Brexit, Europe will most likely continue to defend the interests of its citizens against the worst excesses of the global web firms. But outside the EU, the UK will have very little power to resist them.

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