ALICE PELTON WAS 16 years old when she first went on the pill. Like many teenagers, she found the thought of becoming pregnant terrifying, and starting a course of the combined hormonal contraceptive pill, prescribed by her GP, felt like a logical step.
In the months that followed, Pelton’s mood was all over the place. “I would have these uncontrollable outbursts and cry at really stupid things,” she recalls. “There were blazing arguments with very confused ex-boyfriends and family members… I also would get these really low lows – when it felt like I had a piece of gauze in my brain that stopped the serotonin flowing around it properly – and everything was really flat.”
Looking back, Pelton recognises that her reactions were extreme, her “emotions out of control”. But, given the stereotypes placed on teenagers, none of it seemed too extraordinary at the time.
Years later, she stopped taking the pill following a break-up and noticed a big difference. She felt calmer, more levelled. When she began a new relationship and went back on the pill, her equilibrium shifted once again. “It was like night and day. I had incredible mood swings, cried at silly things all the time… it only took a few days for my mum to turn to me and say: ‘You’ve really changed,’” she says. “That’s when I started to cotton on to what a huge impact these hormones had played on my emotions for years.”
Pelton battled with several different brands of contraceptive pill, as well as other hormonal contraceptives such as the IUD (an intrauterine contraceptive coil), but each came with its own unwelcome side effects. It seemed like an endless game of trial and error. Talking with her boyfriend about it over dinner one night, an idea began to take shape. What if there was a way for women to help one another out, to report and compare their experiences? “I can't believe we don't review our contraception like we do everything else,” she said.
Contraception, she realised, could be approached like any other data problem – but what she found online was a mess of uncollated information. She couldn’t even locate a place where all the different brands of pill were listed. Conversations were happening on forums such as Mumsnet and Reddit, confirming that she was far from alone in her struggle to find the right contraceptive, but the threads were often disjointed and confusing.
A product manager by trade, Pelton took inspiration from an unusual source: Fantasy Football gaming apps, which she’d helped to build in a previous job. “A lot of sport is very data rich, and with Fantasy Football it's all about making choices about the players in your teams and trying to impart a lot of information on a small screen – numbers and assists and points and so on,” she explains.
In 2019, she launched The Lowdown, a contraception review platform and online community which now has more than 80,000 users. The Lowdown’s website offers contraception advice and contains independent reviews of contraceptives contributed by visitors to the site – there are around 4,500 published testimonials so far – all of which can be compared and contrasted through filters such as user age, brand of pill and time spent using it. Pelton describes it as a “Tripadvisor for contraceptives”. The Lowdown also offers telemedicine GP appointments and an online pharmacy.
Although the platform covers all contraceptives, including non-hormonal options, the majority of reviews (65 per cent) relate to the pill, with the combined pill making up 42 per cent of the total. The reviews often focus on side effects – mood swings, weight gain, depression. But unlike other product review sites which typically attract reviews from consumers who have had an especially good or terrible experience, users tend to be pragmatic. “Just my experience – other women might find it works for them,” is a common sentiment.
The overall message is clear: despite the pill’s major societal impact, not to mention its enormous global market, for many people the product is simply not up to standard. Sixty years since its invention, the pill could use an update – and Pelton believes a more user-centric approach is what’s needed.
SINCE IT FIRST came into UK circulation in 1961 (initially via prescription to married women only), the contraceptive pill has revolutionised women’s health and family planning, and is often hailed as the biggest single contributor towards gender equality to date. The combined pill is consistently the most popular prescribed contraceptive across the globe,1 and in the UK more than three million women are prescribed either the combined pill or progesterone-only pill each year.2
“We know that women choose the combined pill as their number one option compared to other hormonal contraceptive methods,” says Diana Mansour, a consultant gynaecologist and senior vice-chair of the Faculty of Sexual and Reproductive Healthcare at the Royal College of Obstetricians and Gynaecologists. She believes the pill’s popularity is down to sheer convenience. “It's easy, it's under their control,” she says. “Women can know when to expect their period or avoid them altogether – it's much more adaptable to our way of life.”
But like any therapeutic drug, contraceptive pills come with a wide range of potential side effects. Irregular or unpredictable menstrual bleeding, headaches, acne, weight gain, depression, anxiety and other mood changes are just some of the more common hazards listed in a typical pill pack’s patient guidance leaflet. A study of women in Europe and the US found that 20-30 per cent were dissatisfied with their contraception, and concerns about side effects were the number one reason why women stopped using the pill.3
Women have been putting up with the unwelcome and unpredictable side effects of the pill since it was invented – such are the risks we are willing to take to avoid unwanted pregnancy. But as access to information widens, some are pushing back.
Sarah Hill, a social psychologist based in Texas, US, speaks loudly of her discontent. “Women will often say something like: ‘I love my new birth control. Now, it made me gain 25 pounds and I don't have sex anymore and my hair is falling out. But other than that, it's amazing!’” she says. “The parameters are so low, because a lot of it sucks so bad.” This sentiment is detailed in her book on the subject, How the Pill Changes Everything: Your Brain on Birth Control.
Much like Pelton, Hill felt compelled to look into reported side effects of the pill following her own epiphany coming off it after a sustained period of time. The irony, she notes, is that during the 12-13 years while she was on the pill, she was studying and researching hormones – “and yet I’d never considered until then that the hormones might be influencing my brain in any way.”
Her aim, she says, is to educate people – not to put them off the pill altogether. “I think there is a bit of an old-guard mentality that we shouldn’t criticise the pill because it’s too important,” she says. “But we can simultaneously critique something and be aware of its flaws, while also understanding that it doesn’t mean we should take it away as a choice... It’s time to demand better.”
It’s hardly surprising if people lack understanding about the way the pill works. “It’s fair to say many of us get way into adulthood without understanding even some of the basic questions around reproductive health and birth control,” says Frances Yarlett, a GP at an NHS practice in Sheffield and one of The Lowdown’s two medical directors. This is nothing to be ashamed of, she adds: hormones are complex, and the science behind the pill extends far beyond a typical secondary school sex education lesson.
Here’s a quick top-level recap: the combined oral contraceptive pill works by preventing the user’s ovaries from releasing an egg each month (ovulation). It does this by tricking the body into thinking it is already pregnant, since it contains artificial versions of two female hormones, oestrogen and progesterone, which are produced naturally in the ovaries. It also thickens the mucus in the opening of the uterus, making it harder for sperm to make their way through to an egg, and thins the lining of the womb, which makes it less likely for a fertilised egg to be able to stay put and grow.
Used properly, the pill is over 99 per cent effective in stopping unwanted pregnancy – an incredible success rate when compared to many other therapeutic drugs. The modern-day pill comes in the form of several dozen different brands, each with varying ratios of oestrogen and progesterone. “Having so many different brands allows us the option to change the type of pill based on the side effect profile for each individual,” Yarlett says. A higher concentration of oestrogen may more effectively prevent breakthrough bleeding, while a lower oestrogen content may help with symptoms such as bloating, breast pain or headaches.
The synthetic progesterone part of the combined pill (known as progestogen) can also impact the different side effects experienced. “Progestogen can be classed as ‘androgenic’,” says Yarlett. “This means they have a greater or lesser effect on the male hormone levels (testosterone) within the body.” More highly androgenic progestogens can be associated with side effects such as acne and mood changes, while anti-androgenic progestogens come with a higher risk of blood clots and have been found to reduce libido in some cases.
All this paints a fairly bleak picture, but Yarlett is pragmatic, pointing out that there are plenty of options and that some women experience no noticeable side effects at all. “Hormonal contraception can have many benefits such as improving skin, controlling heavy bleeding and reducing pre-menstrual syndrome (PMS),” she adds. “Mood swings can often be improved with how the contraception is taken and there is no proven evidence that [taking the pill] causes weight gain.” The trick, she says, is finding the right contraceptive for the right person.
Unfortunately, prescribers are not yet able to accurately predict how each patient will react to a particular pill until they start taking it. “The big problem is we can't yet screen women for any of their genetic makeups that may put them more at risk of severe side effects,” Mansour says. Patients also come with their own additional potential risks: family history, age and weight can all be contributing factors.
Taking these different factors into account, side effects are “an exceptionally difficult area to research,” Yarlett concludes. “Currently, we are stuck with a trial-and-error process for finding the most ideal contraceptive for each person.”
IN AN AGE of rapid medical discovery, why are researchers yet to develop a better pill for everyone? It’s not so straightforward. “A lot of the research that's been done into the side effects of contraception is very inconclusive, and that’s because it’s inherently difficult to do,” says Mel Davis-Hall, clinical editor for the British Medical Journal and co-medical director for The Lowdown. Side effects like change in sex drive and mood are notoriously difficult to measure because they are “so inherently multifactorial,” she explains. “Women are living their lives, going through ups and downs as a result of all sorts of external factors, so you're not going to really get definitive answers.”
It’s here that The Lowdown has limitations: however detailed users’ reviews may be, their experiences are largely subjective, making the information gathered difficult to quantify for use in scientific studies.
Pelton contests this, however, pointing to the mass data collection exercise undertaken through NHS Track and Trace for the spread of Covid-19. “There is a bit of snobbery around what we’re doing with The Lowdown – the criticisms will always be that it’s based on self-reported, biased data. OK, but hang on a minute – aren't we also doing that with Covid-19? Hasn't that proved that millions of people can self-report and talk about side effects and be listened to? Why is contraception any different?”
Making contraceptive data comparison even more difficult is the fact that there is “a dearth of existing data around what women's periods are like normally,” Pelton says. “I think there is a fundamentally sexist attitude towards women self-reporting pain, self-reporting problems, self-reporting periods. Women are being ignored because there is this attitude that we are somehow less reliable. It’s complete bullshit.”
As well as allowing women to share their experiences and make more informed choices, Pelton hopes the Lowdown will be able to contribute to research into contraceptives, particularly when it comes to side effects – and perhaps even help to steer development of new options.
Frederik Petursson Madsen, a Danish entrepreneur and CEO of Cirqle Biomedical, got in touch with Pelton through The Lowdown because he, too, wanted to try something radical: actually asking women what they wanted from a contraceptive product. “The approach was really to understand what makes the ideal contraceptive and trying to find the technology to do it,” he says. “It is my impression that for the past few decades, innovation has been primarily driven from the research side by scientists in labs, not so much by the user perspective.”
Petursson Madsen began brainstorming ideas for new contraceptives when his girlfriend wanted to come off the pill due to unwanted side effects. He believes that the lack of innovation in contraceptive design is down to a degree of ignorance among big investors – who are predominantly men. “I wasn't really aware of the problem,” he admits. “It didn't take long before I realised I wouldn't want to use hormonal contraception either. It just intuitively seemed wrong, something that should be improved. There are not many other areas in which you have a product that's so important for society and where the existing standard of care is so outdated.”
His team sought out specialist consultants working in hospitals and sexual health clinics to report back on conversations they had with more than 1,000 women about their contraceptive experiences. “That confirmed the problem at a much larger scale than we had imagined,” he says. The feedback also suggested a trend in women moving away from the combined pill, “especially when it comes to the mental health-side effects driving it”.
From here, the group arranged a series of workshops, led by Marie Lyhne, Cirqle Biomedical’s design manager. Participants were asked what they liked and disliked about different contraceptive methods, including the pill and condom, as well as what they believed the perfect solution might look like. “We quickly found out that they wanted something that was effective but didn’t interrupt the act,” says Lyhne.
Cirqle’s proposed product is Oui, a hormone-free gel capsule designed to mimic the natural barrier of cervical mucus which sits between the vagina and the uterus. Studies of the gel in action have been positive so far: researchers reported a 100 per cent success rate in sperm blockage in a lab setting. But Oui is yet to make it to human trials, and the company has struggled to secure investment to help it get there – something Petursson Madsen again blames on the gender gap. “The challenge is finding investors who are aware of this kind of need, which might seem surprising, but as a man, it's not something you are typically very aware of,” he says. “It’s definitely something we need to educate investors on.”
Indeed, one of the biggest barriers facing reproductive healthcare is a lack of investment in research for contraceptive development, combined with a lack of research into women’s health more broadly. An open letter published in Nature by a group of leading advisors into global women’s health in 2020 outlines an inconsistency in the fact that the contraceptive market seems to be healthy and growing, valued at $24bn (£17bn) in 2018 – and yet “women’s health issues, and their preferences, are simply under-studied and under-funded, and unmet needs are ignored and misunderstood by those who could work to address these issues.”
Pharmaceutical companies typically spend around 20 per cent of their sales revenue on research into new products, but for contraceptive products the expenditure is just two per cent – most of which is estimated to be focused on existing formulas rather than new alternatives.4 While many of the same pills prescribed today have been in circulation for decades (Microgynon, the combined hormonal pill most commonly prescribed to first-timers in the UK, dates back to 1966)5, some more recent attempts have been made to produce pills with fewer risks of side effects. Loestrin, introduced in 2011, quickly became one of the world’s top-selling brands because it offered the lowest amount of daily oestrogen available, but the product was discontinued in 2019. For the people impacted, no straight swap was available on account of there being no other combined pill with exactly the same amounts of progestogen and oestrogen.6 Loestrin’s distribution company, Galen, released a statement citing manufacturing issues and said that the company was unable to comment any further.7
Despite the booming market, taking risks with new studies is something many pharmaceutical companies are hesitant to do. “With contraceptive research, you're effectively taking healthy young women and putting them at risk of an unintended pregnancy if the contraception that you're trying doesn't work,” says Davis-Hall. Several high-profile cases have been recorded against leading contraceptive manufacturers in recent years, resulting in huge multimillion-dollar settlements. In 2002, Johnson & Johnson launched Ortho Evra, a contraceptive patch designed to release hormones through the skin gradually as an alternative to the oral pill. Six years later, the company had reportedly paid out more than $68m to settle lawsuits brought by women who said they suffered serious side-effects including blood clots and stroke.8
A hormonal contraceptive injection for men, meanwhile, was found to have 100 per cent efficacy in clinical trials, but side effects caused 20 men to drop out and the trial was halted.9 More recently, a contraceptive pill for men passed initial human safety tests in 2019, but researchers say it could be a decade before such a product is ready for sale.
FOR THE TIME BEING, the pill remains popular as one of the few reliable options available to women. It is crucial, therefore, that users get access to the best possible prescription and accompanying information to suit them.
This is one area where The Lowdown already hopes to help. Visitors to the website can search for a particular contraceptive brand or method, read up on its ingredients and reported side effects, or learn more about how to take it. They also have the option of filling in a short questionnaire to receive a recommendation for other contraceptive brands that might suit them, based on their previous experiences. If they like, they can book a private, 20-minute video consultation with medical experts for £37. “When you think the typical GP consultation is up to ten minutes to cover multiple problems as well as deal with administrative tasks, it’s not really long enough,” says Yarlett, who heads up the telemedicine division.
Online pharmacy dispensing increased 45 per cent in 2020, in part due to Covid-19 making in-person GP appointments more difficult. Pelton says she has seen a huge growth in sales of the pill through The Lowdown, but customers cite stock issues as one of the biggest reasons for going private – a problem which existed before the pandemic. “It’s really common for a woman to have used one brand for many years, move to another region or town and then suddenly find they can’t get hold of it anymore,” she explains. Manufacturers and distributors can experience broader supply problems too; when we speak in summer 2021, she says that women are going from pharmacy to pharmacy in search of progestogen-only pill Noriday, which is having stock issues.
Pelton and her team believe that the future of contraception will see more data-rich, personalised medical care that blends NHS services with online resources. “An awful lot of how we can support the NHS is by giving women better access to information and data before or after their appointment,” says Yarlett.
As part of her work with The Lowdown, she is also working to build an algorithm that she hopes could help women to understand their symptoms better as part of a larger consultation package. “The idea is that a woman can input her contraceptive method and her side effect or symptom,” she explains. “From this, she will be directed to either see a GP or healthcare professional for more investigations – with an explanation of which investigations and why we're doing them – or she will receive advice on how she can improve this side effect herself.” This could include changing the way she takes the pill, advising a change in oestrogen level or progestogen type, or trying an alternative form of contraception.
Yarlett hopes that this will help women to understand their own bodies and feel more in control of their contraception and health. She adds that such an algorithm may be classed as a medical device and could be regulated by the MHRA, which The Lowdown is looking into. “Personally, I feel allowing women to have access to this information and the thought process will increase user satisfaction of contraceptives and overall improved health outcomes,” she says.
One other idea is to share information recorded on The Lowdown with consenting patients’ GPs, as a way of saving time during NHS appointments and building more detailed patient profiles to help with diagnoses. “We're all trying to get to the same thing here, which is helping women make their own decisions, that they feel well informed and use their contraception properly.”
Public health officials have already taken note of The Lowdown; the company was approached by NHS England in 2021 to talk to women and answer some common queries about getting the vaccine while pregnant. “That was fantastic to do, and a great sign that we are not only building trust with women but we're also building trust with the NHS,” says Pelton. “It helps that we’ve already got a super engaged community of women who trust us, and we're able to talk to them in a much more free way than maybe NHS communications officials – who need lots of sign-offs for everything – can.”
Pharmaceutical companies have also begun to contact The Lowdown directly for market research into improving their products, and in June, the company provided data from 2,000 survey responses towards the UK government’s call for evidence on reproductive health.10
For the time being, Pelton runs the startup from a co-working space in Brixton, central London, with a permanent workspace being set up in Waterloo. The Lowdown has begun to make a small but steady income from its telemedicine offering, and this year secured backing from health tech investors Calm/Storm VC and Nina Capital, as well as a host of independent tech entrepreneurs. The money is being used to rebuild the online platform for an autumn relaunch and work on expanding The Lowdown internationally.
Pelton hopes that, if there is a lesson to be learned from the Covid-19 pandemic, it’s to take women’s healthcare – and the symptoms they report – more seriously. “I’ll say it to everyone until I’m blue in the face: listen to what women are telling you,” she says. “In the absence of real gold standard clinical research, self-reported reviews are the best we've got.”
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This article was originally published by WIRED UK
