Fair Access To Treatment for Infertility Is A Feminist Issue: Why Aren’t We Doing Anything About It? 0 78

The rights, voices, and needs of people who are denied fair access to treatment for infertility on the NHS remain largely overlooked by the feminist community at large. In the meantime, stealthy modes of patriarchal regulation over reproductive choice and autonomy continue to proliferate.

As with any discussion about perceived interference in the reproductive process, assisted reproductive technology (ART) such as IVF are often contentious and divisive subjects. For the feminist community, reproductive rights and other reproductive health issues – such as access to abortion services, availability of Hormone Replacement therapies (HRT) on the NHS, and access to birth control, among others – are prominent health concerns relating to individual autonomy and empowerment, and exist within the broader contexts of reproductive and social justice. As a community, many of us actively (and laudably) speak out and take action to bring about health equality and justice in relation to these aspects of reproductive health.

Yet oddly – in spite of the fact that the foundation-stones of feminism are built on advocating reproductive autonomy and striving above all for equality – the stigma of accessing treatment for infertility seems somehow amplified within the feminist community, while the incessant rolling back of provision on the NHS in the UK seems to be overlooked entirely. For a movement with the notion of reproductive choice at its heart, there is a noticeable shortage of attention, support, or action dedicated to a person’s right to want and to try for a biological family – if that is their choice – within the feminist community.

As rationing of treatment for infertility continues, the extent of patriarchal regulation over reproductive autonomy grows ever stronger.

In the UK significant inequalities around fair access to treatment for infertility are playing out under our noses. History, experience, and an understanding of intersectional implications of unfair access serve to remind us that we should always be concerned when access to treatments relating to reproductive choice is denied to those who need them. Yet a quick Google search or perusal of social media reveals that there is little dedicated activism, investment, or even mention from either grass-roots or established feminist groups with a focus on fighting unequal access to IVF on the NHS. The rights, voices, and medical and emotional needs of people who are childless but not by choice, and who are denied fair access to treatment, remain largely overlooked by the feminist community, and as rationing of treatment for infertility continues, the extent of patriarchal regulation over reproductive autonomy grows ever stronger.

With so many decisions being made arbitrarily about women’s reproductive health and rights across the globe at the moment, the current ‘postcode lottery’ system for IVF appears to be another way of side-lining the health needs of women, and of legitimizing non-clinical criteria and judgment values in decisions about how to allocate treatment. We expect person-centered, evidence-based care from the NHS (and indeed, these are key features of the NHS Constitution for England), yet in this instance, decision-makers at a high level are applying blanket rules for how a person is to be treated for a disease. Essentially – in spite of the fact that we have a National Health Service, not a Regional Health Service – the current system means that a person’s postcode decides whether or not they receive treatment for a disease on the NHS.

The high prevalence rates around infertility may surprise you. According to the charity Fertility Network UK, 1 in 6 heterosexual couples are affected; of these, many will require medical assistance to conceive. The Human Fertilisation & Embryology Authority (HFEA) also highlights rising numbers of female same-sex couples seeking IVF treatment, as well as an increase in requests for treatment for surrogates. It is likely that the numbers of people affected by infertility are higher still, especially if we consider the broader implications of infertility; for example, the mental health impacts – not just on the individual, but on partners and whole families – for whom no support is currently offered through the NHS. Considered together, infertility represents a huge sub-section of UK society, although one which still often exists in a shadowy, quiet hinterland of unspoken isolation.  

Essentially, the current system means that a person’s postcode decides whether or not they receive treatment for a disease on the NHS. It is impossible to suggest that this is not ethically troubling.

The World Health Organisation (WHO) classifies infertility as a disease and one for which the National Institute for Clinical Excellence (NICE) has issued evidence-based clinical guidelines for appropriate treatment. These guidelines recommend that three rounds of IVF on the NHS offers the best odds of success; and yet in spite of both of these facts, access to treatment on the NHS is currently being rolled back across the country. Local Clinical Commissioning Groups (CCGs – a group of decision-makers responsible for local health spending in England) arbitrarily set their own rules around how much treatment to offer, without recourse to evidence-based guidelines or what is in the best interest of individual patients. Contrary to explicit government guidelines, five CCGs (to date) have decided to offer no treatment at all. Essentially, the current system means that a person’s postcode decides whether or not they receive treatment for a disease on the NHS. It is impossible to suggest that this is not ethically troubling.

If unequal access to treatment for reproductive health on the NHS in the 21st century isn’t troubling enough, the reasons cited for the rolling back of treatment should cause concern. The South East London partnership (SELCA) who jointly hold responsibility for commissioning services and allocating funds has recently come under fire when their policy document was unearthed and shown to state that single parents must pay out of pocket for treatment based on the obviously unfounded rationale that children of single parents are at a ‘known disadvantage’. According to the rationale espoused in the document, ‘Single mothers are generally poorer; they are likely to have greater support needs compared to two-parent couples, thereby placing a greater burden on society in general’.

The suggestion that single mothers are a ‘burden on society’ is not only offensive, but it also constitutes a massive disservice to thousands of single parents who are doing as good a job of raising their children as any two-parent family. More to the point, this kind of outdated, overtly discriminatory and stigmatizing non-clinical rhetoric has no place in a policy document outlining reasons not to offer treatment for infertility. And yet the South East London Partnership’s policy seems to have gone unnoticed and unchallenged by the feminist community at large. Where is the outrage, the solidarity of women speaking out in anger, the statements of intent from feminist collectives or organizations keen to hold CCGs and policy-makers to account for the sake of social justice and equality?

Certainly, these statements would not be tolerated or overlooked in relation to any other aspect of healthcare, reproductive or otherwise… imagine the outcry if sentiments such as these had been cited as reasons not to treat single women for a chronic disease such as MS, where it sadly often follows that a person may well require additional care in the future, or may have additional support needs, or require financial support. It’s entirely unconscionable that this refusal to offer treatment based on a person’s relationship status would ever become a reality, or that we would tolerate or accept it if it did.

The uncomfortable question arises: why then should we ignore this kind of statement in relation to treatment for infertility? Is it possibly because we apply our own value judgments on the importance of biological family, thereby discounting entirely that other people should aspire to this? Or is it (as one Twitter commentator angrily informed me) because infertility ‘is not a life-threatening disease’, the inference being that we shouldn’t bother to treat it? What then about treatment for other conditions which are not life-threatening, such as hormone imbalance commonly experienced in menopause? It’s not life-threatening, after all… yet many from the feminist community have been notably (and again, rightly) outspoken on fair access and provision to HRT, especially given the looming threat of Brexit and the uncertainties around access to medications in the immediate aftermath.

Add other sweeping value judgments being touted by CCGs to justify their decisions to roll back treatment and an unsettling picture starts to emerge. Take for example NHS Stockport CCG’s recent statement offered in an attempt to justify plans to roll back access to treatment because this ‘uses resources that could be spent on really making a difference elsewhere’, and that the NHS does not want to carry out treatments/procedures which have little health benefit’. Infertility is framed as a fact we just have to deal with rather than as a disease, while IVF is framed as an expensive luxury rather than a clinical treatment for a disease. The implication that treatment for infertility doesn’t make a difference to the people who have no choice but to undertake IVF in their pursuit of a family is both incredibly obtuse and patently untrue. Just ask any person who has needed to access treatment to have any chance whatsoever of starting their family.

There is also an overt and important economical intersection to consider in relation to fair access to treatment. Thousands of people experiencing infertility are unlikely to be in a financial position to be able to pay the extortionate costs of private treatment – which can range from anywhere between £2,000 and £10,000 per round – without bankrupting themselves. A recent article cited evidence that IVF is becoming an option available only to the middle-classes only due to the UK having some of the highest costs for treatment in Europe; effectively, entire demographics of people are being priced out of starting a family if they are affected by infertility.

It’s worth recognising that the high-level decision-makers responsible for rolling back treatment will inevitably hail from the upper-middle-class, and will have been saturated in the male-dominated fields of medicine and possibly also politics; the hard realities and hopelessness of being unable to pay the extortionate costs of private treatment, and the multifaceted impacts of involuntary childlessness, are very likely to be entirely lost on them. The current system is certainly most likely to be alienating people who we know may be more likely to experience economic inequality in the first instance, including single women, women, and people of colour, same-sex couples, and people from the LGBTQIA+ community. As we know all too well from Audre Lorde’s wise words, ‘there is no such thing as a single-issue struggle because we do not live single-issue lives’.

A quick Google search or perusal of social media reveals that there is little dedicated activism, investment, or even mention from either grass-roots or established feminist groups with a focus on fighting unequal access to IVF on the NHS.

Perhaps the current lack of engagement from the feminist community at large with this particular reproductive injustice can be explained by a general lack of awareness about the inequalities which are playing out in the UK around access to treatment on the NHS – although this seems unlikely given the increasingly frequent coverage this is given in mainstream media. Perhaps the issue is that there is relatively little feminist discourse or activism taking place already to highlight this as a significant issue to the rest of the community (much of the literature which appears on this subject online is academically theoretical or clinical). The only alternative is that fair access to treatment for infertility is considered somehow less relevant than other issues relating to reproductive rights and autonomy, and that seems both unconscionable and unfathomable. Perhaps I am in fact doing the feminist community – and many of the individuals within it – a disservice by reverting to a totalising generalisation.

Maybe for women – and perhaps especially for self-identifying feminists – there is a reluctance to speak openly about infertility or the need or want of clinical treatments such as IVF because we are convinced that we will be judged by others as regressive, or falling for the retrogressive idea of biological determinism. Our desire for a biological family might be judged as outdated or retrograde. After all, women have fought for years to emancipate themselves from the idea of biological determinism and patriarchal notions that our value lies in our ability to reproduce. In 2014 Professor Andrea O’Reilley called for recognition of an ‘urgent need’ for motherhood to be acknowledged within a model of feminism that ‘positions their needs and concerns as the starting point in theory and activism on and for women’s empowerment.’ Professor O’Reilley had noticed all too often the idea of feminism for mothers was ‘dismissed, trivialized, disparaged, and ridiculed’ within the movement; why then should women who aspire to be mothers, but are unable to, receive the same treatment?

Given that we currently live in a time when taking steps to address climate change and the exploitation of natural resources is so vital, we may also be accused of willingly contributing to the climate emergency and the over-population of the planet – even though the Office for National Statistics (ONS) reported that the birth-rate in England and Wales hit a record low in 2018, and the total fertility rate is now at its lowest since 2002. Interestingly, the ONS report highlights that this pattern is not exclusive to the UK: a similar trend in declining numbers can also be seen across the globe.

In spite of this, we’re often questioned – sometimes harshly – about why we don’t ‘just adopt’ and do the world a favour by limiting our own contribution to the impact on the environment and focussing our efforts on the countless children who need and deserve a home. The subtext of this being: just put your desire to become a biological parent to bed, and move on. Of course, adoption is a truly wonderful way to create a family, and families made through adoption – whether because of involuntary childlessness or by choice – are in no way any less valid or rewarding than a biological family. But the fact that adoption is so frequently offered as the simple answer to infertility reveals a great deal of ignorance about the realities and challenges of the adoption process. Much like IVF, with its manifest physical, emotional and mental health impacts, adoption is not a process which people usually (or should) choose to opt in to lightly or under the illusion that it is a straightforward enterprise. It is also fundamentally insensitive to suggest that adoptive children should be treated as a catch-all answer to a physically and emotionally challenging – not to mention, deeply personal – health issue such as infertility.

Perhaps most important of all is reproductive choice as the cornerstone of feminism. For some women, adoption isn’t a choice they want to make, and forcing this as the only ‘option’ open to people experiencing infertility does not empower, and is not truly giving them a choice. As eminent feminist academic Gloria Steinem reminds us, ‘Each individual woman’s body demands to be accepted on its own terms.’ Respecting and empowering women’s bodily autonomy, wishes, and decisions – including the wish to create a biological family – must also be accepted on individual terms.

If this kind of dismissive and disparaging response were a one-off I wouldn’t have written this article.

It took five long years of struggling silently with infertility and the strange, conflicting emotions this raised in me to decide enough was enough and to do something about it. I went about setting up a campaign under the handle @IVFfairness calling for equality of provision on the NHS in accordance with NICE clinical guidelines. Knowing how outspoken and supportive my fellow feminists are about reproductive rights, I sought support in a variety of places, including feminist political organisations, online networks, and local collectives. To my dismay, the vast majority of my messages and posts went unacknowledged, and I soon discovered that judgments like the ones described above are not just being touted by detached decision-makers who frustratingly focus on cost at the expense of person-centered care, but by members of feminist communities on- and off-line.

One person whose response to a post I decided to put out requesting support to tackle this injustice stood out, not least because they were one of the only ones to respond. They had populated their Facebook page with fairly typical feminist sentiments about equality (as well as one notable post urging people to be kind to other people online), but still chose to respond coldly – and at some length – to my message.

‘The world is overpopulated as it is,’ came the hostile greeting. ‘Having a baby is a choice […] Why should my taxes have to pay for someone else to get pregnant when I am choosing not to have kids?’

Eventually, their diatribe concluded with the half-statement, half-question: ‘There are tons of kids in the system that deserve just as much of a chance as the ones popped from a vagina don’t you think?’
The twisted logic of personal choice somehow being relevant or applicable to other people’s choices was overshadowed by the more prominent confusion about where this person thought these children ‘in the system’ originated from if not from a vagina. This remains a mystery to me to this day.

If this kind of dismissive and disparaging response were a one-off I wouldn’t have written this article. Other posts about this issue posted in feminist forums were met with similar responses or complete silence. But more disheartening still have been the responses from specific feminist organisations and groups I have approached for support. In the initial months of campaigning I decided to reach out to MPs, charities, organisations, and people. Incredible support came from numerous – and often unexpected! – places: just not where I expected to find it. Letters and emails submitted to various outspoken feminists and authors (who I won’t name individually here) went unanswered – without exception – as did attempts to engage on social media.

More disappointingly, a notable lack of support came from an organisation I thought would be an ally. At one time I was a founding member of their Oxford branch, but the Women’s Equality Party (WEP) still replied to me, in brief, to say that they couldn’t help publicise the campaign or the parliamentary petition calling for fair provision on the NHS because they ‘are only able to promote initiatives [they] are directly involved in’. A follow-up email explaining the importance of this issue and its relevance to their broader remit and aims was met with a short, impatient response about ‘how busy they are.’ That put an end to our correspondence

On looking into this I came across an article about how ‘health equality is the next goal’ for the Women’s Equality Party, and also discovered that their mission statement ends with ‘We will pursue equal healthcare’. They are also currently running a specific campaign to ‘protect vital NHS and social care services’, yet somehow the issue of unfair access to (and in some places the complete removal of) infertility treatment isn’t an issue within their remit. In spite of this, a handful of other health-related topics – saving the NHS; cervical screening; abortion rights and access to services; endometriosis; the accessibility of HRT; ‘making menopause matter’ – somehow manage to fall within their list of subjects about which they are willing to take action. For me, perhaps the saddest irony of all, in particular, is the WEP’s regular but apparently meaningless social media endorsements about ‘#equalhealth.’

The Women’s Equality Party mission statement ends, ‘WE will pursue equal healthcare’ – but this doesn’t seem to apply to fair or equal access to treatment for infertility.

Not long ago I wrote an article about how empowering personal activism can be; it’s a genuine shame that a political party which built itself from the ground up should refuse outright to support local, grass-roots activism and the individuals who are trying themselves to make a difference. After all, how can you possibly meaningfully empower others if you refuse outright to engage with issues outside of your own remit? I know I am not the only one point out that the WEP have lost members and struggled to get people to continue to attend meetings by failing to fill the void of meaningful community grassroots action and empowerment.

‘Each individual woman’s body demands to be accepted on its own terms.’ Gloria Steinem

Ultimately it seems obvious that reproductive health isn’t a single issue concept, and any principled feminist would likely agree that we can’t cherry-pick the aspects of women’s reproductive health and rights we support. In relation to the postcode lottery for fertility treatment and IVF on the NHS specifically, ignoring this facet of reproductive justice only perpetuates health inequality and economic disadvantage, and continues to force countless women and people across the country to choose between some semblance of economic security and the chance of having a biological family – a fact that, from my experience, has yet to be sufficiently acknowledged by the feminist community at large. If we aspire to true reproductive autonomy and justice, we must ensure that our fight for equality and fair access to reproductive treatments include those which not only end a pregnancy but might instigate one.

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Feminist activist campaigner, PHD, and bibliophile. Volunteer Coordinator for Oxford Pride 2020 and also leading the #IVFFairness campaign to End the IVF Postcode Lottery on the NHS.

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