Women’s healthcare: where is the woman’s voice?

It’s time to shine the spotlight on the inequalities we still experience in healthcare. While some progress has been made, the world of clinical research is still a man’s game. We still experience a serious lack of representation in clinical trials, pharmaceutical companies are reluctant to invest in new forms of contraception and the pervasive myths that our biological make up makes us too difficult to study remain prevalent. In light of this, we’ve decided to take an in depth look at the lack of voice in women’s healthcare, and the need for radical change.

The Contraception Gap

“I think it’s insane that women have not had an option like this before now.” That’s the opinion of Chief Executive Officer of Evofem Biosciences, Saundra Pelletier, on the development of a non-hormonal, contraceptive gel for women, which has been hailed as ‘the biggest breakthrough in birth control since the 1960s’.^{1, 2}

‘Insane’ is no exaggeration: between 2018 and 2020 alone, Pelletier raised a reported $306.7 million from investors³ and hired 128 new employees⁴ in her pursuit to bring a recently approved contraceptive gel to market.

With as many as 91% of women in the US reporting dissatisfaction with their birth control method,⁵ and an ROI on contraceptives in the UK estimated at £9 per every £1 spent,⁶ it is surely ‘insane’ that greater attention and funding aren’t focused on developing better contraceptive options.

The gel claims to meet an unmet need for women by providing a woman-controlled, non-hormonal, and instant-working contraceptive option.⁷ Yet, despite its original development in 2013, it only received FDA approval in May 2020.⁸ So, why is progress in women’s healthcare so slow?

Lack of impetus to tackle the ‘contraception gap’ is one of many ways women are overlooked in the healthcare sphere. Between 1987 and 2012, women made up only 25% of participants across 31 landmark trials in cardiovascular disease,⁹ despite CVD being one of the world’s biggest killers of women.^10,11

Similarly, while women represent 55% of HIV-positive adults in the developing world, we only make up 38.1% of participants in vaccination studies and 11.1% in studies seeking to cure the disease.¹² Meanwhile, there has been a paucity of clinical research in pregnant women since the wake of the thalidomide scandal, which resulted in the banning of women of childbearing ages from taking part in clinical trials between 1977 and 1993.^13,14 Decades of advancement have failed to take women into account – and the case of contraceptives is no exception.

There is arguably no advancement of greater cultural significance than the widespread availability of the contraceptive pill in the 1960s. This important milestone, often credited with triggering the women’s sexual revolution,¹⁵ gave birth to its own economic revolution in turn.¹⁶ Empowered, women achieved the careers they desired, the economy thrived, and women gained effective and complete control over their fertility. The baby boom was over, and the problem of contraception was solved forever.

Except, that it wasn’t. Despite the pill’s unwavering popularity (it has remained the most popular contraceptive in the UK for over 50 years),¹⁷ recent evidence suggests that public sentiment about the pill is shifting.¹⁸

Firstly there is the cultural gap that charges women with the financial, physical and mental responsibility for preventing pregnancy. Presenter and DJ Ashley James recently hit back at headlines placing the blame of delayed parenthood solely at the feet of women with a viral Instagram post. Meanwhile, writers have pleaded with men in recent years to step up and carry their share of the contraceptive burden.¹⁹

Furthermore, when a 2016 Danish study reported that hormonal contraception was linked to an increased risk in depression, many women around the world saw this as confirmation of what they’d long suspected.²⁰ And literature continues to emerge about the relationships between hormonal contraception and our likelihood of developing mood and anxiety disorders, our choice of mate, sex drive, emotional processing, weight, learning and memory (this is by no means an exhaustive list).²¹ The demand for more contraceptive options certainly seems to exist, so why the delay? The answer is that studying contraception requires studying women, which some claim clinical trial research has neglected to do effectively for decades.

Inconvenient Research Vessels

“It’s not always easy to convince someone [men] a need exists, if they don’t have that need themselves.”²²

In her 2019 work Invisible Women, feminist writer and activist Caroline Criado Perez exposes systemic discrimination against women in the healthcare sphere. She calls out the bodies that fund clinical research for their failure to recruit female participants in clinical trials (and their subsequent failure to disaggregate their data when they do involve women).²³

Firstly, she points out, the myth persists in medicine that women’s physiology is simply too ‘complex’ to study; it strays too far from the historical ‘male norm’ of medical education, which renders anything outside of its firmly defined boundaries as ‘atypical’.²⁴

Criado Perez criticises medicine’s tendency to view women as simply a smaller version of the male default, because women’s physiology is different down to a cellular level.²⁵ (And this is big news when you consider all the intricacies of the human body). Furthermore, a whole range of different drugs from antipsychotics to heart medication have been shown to be affected by the menstrual cycle.^26,27

Science’s solution? Thanks to the medical world’s perception of women as ‘inconvenient research vessels’,²⁸ research is most often conducted in women ‘in the earlier follicular phase of their cycle, when hormone levels are at their lowest’. Basically, when they are superficially most like men.²⁹ This is ostensibly to ‘minimise the possible impacts oestradiol and progesterone may have on the study outcomes’,³⁰ but these impacts aren’t minimised in real life: for example, some antidepressants have been found to affect women differently at different times of their cycle, meaning that dosage may be too high at some points and too low at others. Sadly, women are often more likely to experience drug-induced heart-rhythm abnormalities. These can prove fatal, and the risk is highest during the first half of the menstrual cycle.³¹

Trials and Error

Aside from our ‘burdensome’, unpredictable physiology,³² some researchers also claim that it is simply too difficult to recruit women thanks to their caregiving responsibility.³³ Criado Perez points out that researchers are able to recruit female participants when they are truly motivated. Women make up only 32% of research on coronary stent studies, for example, but represent 90% of participants in facial wrinkle correction trials (for which researchers are presumably able to tear women away from the school run).³⁴

Our lack of access to better and more varied contraception choices really comes down to the same factor that dominates decisions globally, money. The lack of innovation in the contraceptives market since the advent of the pill in the 1960s is ultimately because big pharma is not set to make much money out of it.³⁵ “The pill is as cheap as chips,” Anna Glasier, honorary professor at the University of Edinburgh, told Bloomberg in 2019. “So everything has to be not much more expensive than that.”³⁶

Evidence does seem to suggest pharmaceutical giants do not prioritise the development of contraceptives. Only 2% of drug companies’ annual revenue from contraceptives goes back into research and development according to the Gates Foundation.³⁷

It is also worth bearing in mind that phase one trials for generic drugs are conducted ‘almost exclusively’ in young adult males, with phases two and three representing a more even split of men and women. However, according to the FDA, the second most common adverse drug reaction in women is that the drug has no effect at all. It may clearly work for men,³⁸ but women are missing out on treatment due to medicine’s failure to represent us during phase one trials. By this logic, women are also potentially missing out on drugs that are ruled out at phase one trials, because they have no effect on the male participants at phase one.³⁹

So why aren’t we doing more to demand that men carry their share of the contraceptive burden? There has been speculation about a male contraceptive pill for decades, yet in 2022, ‘optimistic’ researchers say it’s still several years away.⁴⁰ The reason it seems, is a double standard in what are deemed acceptable side-effects in men. In 2016, a study trialling a hormonal contraceptive injection in men was abandoned for adverse effects including acne, mood swings and depression. Yet this is par for the course for women taking already approved hormonal contraceptives, and these women experience adverse effects at the same frequency as those shown in the cancelled male trial.^41,42

It should be astonishing to us that gender bias is notably impacting such a fundamental issue as family planning in the ‘modern’ world, let alone preventing women from accessing life-saving treatment. Yet it persists, and we are used to having to make our voice heard.

In fact, ‘Make your voice heard. We’re listening’ is the invitation extended to all women by pharmaceutical company Organon, as part of their ‘Here for Health’ programme. The programme encourages women to share their opinions about what is overlooked in women’s healthcare.⁴³ The company is led by a ‘majority female leadership team’, making it clear that their focus is firmly on women, stating ‘we understand that women are foundational to a healthier world’. Organon certainly seem to practice what they preach when it comes to women’s health. This International Women’s Day they will give paid time off for all employees, to focus on their own health in recognition of growing women’s health inequality.⁴⁴

One way or another, an overhaul in how we approach the topic of contraception is long overdue. Criado Perez’s warning is stark: “Women are dying, and the medical world is complicit.”⁴⁵ We need to establish a dialogue between women and the world of medicine, and we can start by facilitating that conversation.

We must remember that the issues surrounding women’s inequality in healthcare are structural, deep seated and the product of a patriarchal system that dominates all aspects of society. Change won’t happen overnight, and it won’t come easily, however it is long overdue. It’s time to put women’s voice at the heart of healthcare, the future of our health depends on it.

At Onyx Health we are passionate about championing women’s health communications. Working alongside pharmaceutical, medical technology and healthcare companies, we deliver innovative campaigns that engage and inspire healthcare professionals, enabling them to provide the best treatment for their patients.

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