When Ngawai Moss fell pregnant, she came face-to-face with one of the biggest NHS blind spots. But no one is talking about it. 

98% of drugs on the market have not been tested in pregnant women. For those with chronic conditions, this forces an impossible choice: either risk your own health or risk your pregnancy. Many women choose the latter – and if they don’t, they are judged for it.

Medication changes can destabilise conditions if not carefully managed

As a person with epilepsy, Ngawai is well-acquainted with the NHS. Like millions of others, she has to take anti-seizure medication (ASM) everyday to manage her condition. Without it, she is at risk of potentially dangerous seizures.

Even switching medicines can cause problems, as Ngawai soon found out. Before she decided to try for a baby, a healthcare professional recommended she change to a different medicine, since she had suffered a miscarriage on her original one. That process, however, is long. It takes weeks, or months, to taper off the old one and introduce a new drug, and many women – either due to age or circumstance – feel they cannot afford to wait. But move too quickly, and your condition could become unstable. 

In Ngawai’s case, the transition caused her to have a seizure. 

“You might think ‘Oh, it’s just a seizure’,” she says, “but actually, it means you can’t drive for a year until you’re seizure-free, for example. There are a lot of repercussions that people don’t realise.” 

While planning is important and beneficial, it isn’t always possible, and many people become pregnant unexpectedly. And because a lot of drugs have not been rigorously tested in pregnant women, many fear that continuing normal treatment could greatly risk their baby’s health. 

“Sometimes, when people find out,” she says, “they either reduce their medication or stop taking it altogether.” 

Pregnant women are scrutinized heavily 

The stigma around the topic makes things worse. Ngawai explains that medicines “don’t have the best reputation” in pregnancy, reflecting long-standing caution and limited safety data, which could lead to women having to make decisions about their health because of unwanted pressures. 

The literature agrees. A large UK survey found that many pregnant women felt prescribing, dispensing or taking recommended medicines was restricted due to fear of fetal harm. Some said that even when a GP had prescribed a medicine, pharmacists refused to dispense it, reflecting their caution around the lack of available evidence. Others described feelings of guilt or shame, as if they were “bad mothers” for taking needed meds. 

A different survey of 503 women found that 68% stopped taking antidepressants or anxiolytics before or during pregnancy, again commonly out of fear of fetal harm. Many, however, cited social and medical pressure. Like ASMs, antidepressants or anxiolytics are not medicines that you should abruptly stop taking; sudden withdrawal can lead to “brain zaps” that feel like electrical shocks in your head, insomnia, flu-like symptoms, delirium, suicidal thoughts, and – of course – anxiety and depression. 

Even going to a cafe becomes a playground for stigma 

You don’t have to scroll through a research article to see the impact. Go online, and there are plenty of examples of members of the public shaming pregnant women for engaging in “mild behaviours.” For example, one of the most heavily judged, but wrongfully so, activities is drinking caffeine. It’s a widespread myth that “you should only drink de-caf coffee during pregnancy,” and while doctors advise against excessive consumption, drinking full-caf coffee is fine in moderation. 

Nonetheless, judgment is rife. A reddit forum-poster reported being “judged several times now when ordering earl grey tea.” She added: “It’s not like I’m chugging an extra large coffee, and we’re allowed up to 200mg per day!” 

Another incident happened when a stranger threw away a pregnant woman’s coffee, insisting “You can’t have that, you’re not allowed.” The woman had to explain that her doctor said it was okay: “I get one cup a day. This is it,” she told the stranger.  

If pregnant women feel like they can’t have a cup of coffee, it’s no wonder they feel judged for taking pharmaceutical drugs. While many women choose to stop taking medicine instinctually  – following the notion: “no one knows what will happen to my baby if I continue with this medicine” – stigmatization from both the public and medical professionals complicates matters, making prospective mothers feel shame for trying to look after their own health while pregnant.    

An empty space

It does make sense why many women stop taking medication when they find out they’re pregnant, given the majority of drugs haven’t been tested in pregnant women. It is often assumed that research in pregnancy is avoided because it is inherently unethical or too risky. But the picture is complex and much of the reluctance stems from regulatory caution, liability concerns, and a lack of established trial pathways, which can in turn make clinicians hesitant to recommend participation.

No less, it's not always clear why this reluctance exists. A US National Academies report found little evidence of legal liability arising from research involving pregnant and lactating women, and concluded that excluding them from clinical studies may in fact shift greater ethical and clinical risk into routine care, where medicines are prescribed without robust evidence.

It’s transparent in the data: the European Medicines Agency (EMA) found that less than 0.4% of clinical trials in the EU include pregnant women, and product leaflets usually lack usable information for clinicians about how medicines work in pregnancy. In the UK, pregnant women are included in just 1.1 % and breastfeeding women in only 0.6 % of trials, highlighting how limited research participation remains for these groups even as the wider trial landscape expands. It forces decisions to be made with very little evidence.

What is harder to understand, however, is the lack of support to women with chronic conditions in spite of a lagging research landscape. What I mean by that is, if there’s less research in a specific area, the health system should – perhaps – pay closer attention to patients affected as a result, rather than following the ill-fated logic of “well, we don’t know, so they can figure it out themselves.” 

Even though Ngawai’s health suffered, she tells us that she was luckier than most. Pre-conception counselling is rare in general practice, and sometimes “people don’t even realise they need to speak to a specialist” when they are thinking about trying to conceive. 

“Pre-conception health is very under the radar,” says Ngawai. “It’s not invested in. But in terms of prevention, trying to get people to optimal health during that pre-conception period is really important.”

As Ngawai says, there is a clear gap. A 2023 report from the Children’s Alliance found that women and men are generally unaware of how lifestyle can impact their baby’s health, with many overweight and still smoking at the start of their pregnancy. The report captured media attention as headlines lit up with tales of the government’s “failure” to prepare expecting parents; though, disappointingly, national papers remained silent on the matter. 

Professor Keith Godfrey, one of the authors on the paper, told press: “Preparation for parenthood is crucial for levelling up opportunities for children and can help tackle disparities in their health. However, preconception care remains undervalued in the UK and the Government’s health policies have either failed to help people of reproductive age or are too late for women entering maternity care.” 

It served as a call to action, with the report calling for initiatives like equalizing access to preconception care services, moving preconception healthcare into related health policies that tackle smoking, obesity, and drinking, and adding preconception care to school curricula. 

On the up? 

Things are, slowly but surely, changing. In 2024, the NIHR launched a “maternity disparities consortium”: an initiative to build up capacity in medical research that should address some of the inequalities across pregnancy and early motherhood care. This involves five research “themes,” and while none of them explicitly mention managing chronic conditions in pregnancy, Ngawai tells us that there will be “some elements” weaved into plans as “it's an important space.” She notes that this is an important and long-standing gap, and one that she hopes will increasingly surface as the work develops.

Perhaps more excitingly, though, is what’s happening around the globe. The EMA is currently developing international guidelines to encourage the inclusion of pregnant women in clinical trials, which Ngawai says will hopefully become available next year once the consultation process has concluded. 

Simultaneously, in January 2025, the EU launched a £10 million project, “PIPELINE,” a platform to quickly evaluate safety and effectiveness of new interventions for infections in pregnant women – again, while this does not necessarily cover chronic conditions, its inclusive design is expected to have wider benefits beyond its immediate focus.

But these institutional endeavours would be quite flimsy without the cultural shift to prop them up. “There’s a lot of stigma around research in pregnancy,” says Ngawai. “But the reality is that if we want answers to our questions, we have to do the research.” This doesn’t necessarily mean undertaking “fresh” research, notes Ngawai, but could mean leveraging existing data buried away in a metaphorical filing cabinet.

“People don’t think pregnant women should partake in research,” she adds. “But women have different thresholds of risk. I do think, generally, women are open to it, but sometimes it’s not even their decision because there are no studies available for them to take part in.” 

She calls for attitudes of the broader public to change, so that women feel like they have the choice whether to engage in medical research or not. 

Waiting for change

For the time being, there is still limited support for for women with chronic conditions during pregnancy, and the guidance, even if it is there, is not necessarily backed up by hard evidence. As Ngawai says, “For some conditions, there aren’t many people who know how to manage it,” and, likely, even fewer who know how to navigate the disease during pregnancy.

We wouldn’t expect anyone to trial-and-error their disease management, but for some reason, that sentiment doesn’t apply to pregnant women. But this time when women are most vulnerable should not intersect with the health system’s blind spot– we need to do better.