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Opinion

“There’s a consistent theme of neglect when it comes to the health of women and AFAB individuals – amplifying their voices is key”

By Valentina Milanova, founder of women’s health company Daye

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The gender health gap describes the disparity in health outcomes, medical attention and treatment experienced by male and female patients, says Valentina Milanova.

Research has found that women are often misdiagnosed, receive poorer medical advice and have worse medical outcomes than men.

There are many factors that contribute to this, including systemic sexism and patriarchal structures within healthcare provision and medical research.

Historically, women and assigned female at birth (AFAB) individuals have been, for the most part, excluded entirely from clinical research and trials.

It wasn’t until 1993 that a law was passed that made it illegal for clinical trials to exclude women and AFAB individuals from their recruitment practices.

What this means on a very practical level is that the majority of medications on the market today were never designed for, or tested on, the female physiology.

This includes medications that were specifically designed for women, such as the female Viagra, which was predominantly tested on men – 92 per cent of those tested were male.

The lack of research has had a significant trickle-down effect, and to this day, women’s bodies and specific health conditions continue to be misunderstood and misdiagnosed.

A study published in Nature shows that women get diagnosed with diseases far later than men. For cancer, women get diagnosed two and a half years later. For diabetes, women are diagnosed four and a half years later.

This study was based on data from over seven million Danish health records, which were obtained over the course of 21 years. The researchers discovered that women were diagnosed later than men in over 700 diseases.

Significant racial and socio-economic factors are also prevalent, leading to further inequality in the access to and medical treatment of non-white women and AFAB individuals.

Most neglected areas of women’s health

There’s a consistent theme of neglect when it comes to women’s health, and it is a hugely underfunded area of medical research.

Typically conditions such as endometriosis, polycystic ovarian syndrome (PCOS), chronic pelvic pain (CPP), and dysmenorrhea or menstrual pain are often referenced as being significantly misunderstood, despite being statistically very common in women and AFAB individuals.

The majority of women (90 per cent) experience menstrual pain, yet no localised treatment has ever been developed despite researchers at the University College London revealing that period cramps can be just as painful as having a heart attack.

At the same time, male conditions like erectile dysfunction, which affects only 19 per cent of men, receive the lion’s share of clinical focus and research funding. In what world is this fair?

Another example is coronary disease, which is the leading cause of mortality in women. Yet, the heart attack diagnosis criteria are entirely based on symptoms that show in the male, not the female, physiology.

According to a British Heart Foundation study, women going through a heart attack are 50 per cent more likely than men to get misdiagnosed and turned away from emergency rooms – in part due to physicians only knowing how to recognise the typical heart attack symptoms for men.

Amplifying women’s voices in the healthcare conversation

Women and AFAB individuals’ voices and experiences need to be proactively considered within all levels of the healthcare system, including policy making.

Any acknowledgement and plan, such as the Women’s Health Strategy for England, to address the gender health gap is a significant step in the right direction.

It’s important that we keep talking and use any platform we have to elevate women’s voices within the healthcare space.

With the rise of Instagram, TikTok and other social media platforms, there are low cost ways to reach, educate, and inform millions of people.

It’s also really important to destigmatise conversations around gynaecological health. A study exploring attitudes around female genital slang found that 65 per cent of respondents avoid using the words like ‘vulva’ and ‘vagina’ as they deem them embarrassing or offensive – and opt for euphemisms such as ‘fanny,’ ‘lady parts’ or ‘honey pot’ instead.

Period talk is met with similar disdain. When the UK government announced the abolition of the tampon tax earlier this year, the reaction on social media was littered with expressions of repulsion, with many insisting that the discussion should be kept ‘polite and private.’

This is a message that women and AFAB individuals have heard and internalised throughout their lives and is something that has to change.

In order to close the gender health gap, access to information is key.

The impact of digitalisation within healthcare could be huge. Any attempt to democratise access to crucial information about our bodies can ultimately help women and AFAB individuals to make more informed, better suited, medical decisions.

What Daye is doing to fight the gender health gap

At present, there is a massive gender funding gap within healthcare. For example, less than 2.5 per cent of publicly funded research is dedicated to reproductive health, despite the fact that a third of women in the UK will suffer from a reproductive or gynaecological health problem at some point in their lifetime.

Our strategy to fight the gender health gap is to invest in medical research and innovation to create products that serve long neglected gynaecological health needs.

Our vision is to use the revenues from our commercially successful products to create an evergreen source of funding for medical research. This strategy will help us fight the gender funding gap that currently exists.

Valentina Milanova is the founder of Daye, a women’s health research and development company developing products for period pain, at-home STI testing and vaginal infection treatments.

Opinion

The continued struggle for female representation in drug trials  

Dr Janet Choi, chief medical officer at Progyny

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Dr Janet Choi, chief medical officer at Progyny

The exclusion of women from drug trials undermines efforts to ensure equitable and effective healthcare for all individuals.

In 2002, the Women’s Health Initiative (WHI) was forced to pause its study on hormone therapy’s effect on menopause symptoms due to results showing it increased the risk for breast cancer, stroke and heart disease, and thrombotic events like pulmonary emboli.

Over 20 years later, in May of this year, JAMA published a review of this study and determined that, given current available hormone therapy formulations as well as risk/benefit analysis, younger menopausal women may actually derive significant benefits from menopausal symptom relief with appropriately prescribed hormone therapies.

The initial study had looked at women who were older and typically years post-menopause – the average age of the study participants was 63.3 years – and the age-related changing of blood vessels, among other things, may be the key to shifting from greater risk to greater benefit with hormone therapy.

I wish this more measured summary of the study’s findings and recommendations had been headlined back in 2002 – and I imagine thousands of my OB/GYN colleagues and billions of menopausal women over the years feel the same.

Yet, due to these 2002 over-generalised published findings, doctors and patients shied away from hormone therapy, which led to unnecessary suffering for many symptomatic menopausal women.

The irony of the WHI study is that after decades of women being excluded from clinical research, Congress finally passed an act in 1993 requiring that the National Institute of Health (NIH) enrol women and persons of colour in clinical trials.

On the heels of this landmark decision, the intentions of the WHI study were excellent – a first of its kind for women – but may have unintentionally set back women’s health innovation.

The reality

If you’re wondering why we are just now reevaluating and reinterpreting findings made in a 2002 women’s health study you may (or may not) be shocked to learn that while there is growing inclusion of women into research trials, they are still underrepresented in key therapeutic research areas, such as cancer and cardiovascular disease.

Excluding women from drug trials can have several harmful consequences. First, it can lead to a lack of understanding about how medications affect women differently than men, as their physiological responses may vary due to hormonal and metabolic differences, among other factors.

This can result in ineffective or potentially harmful treatments for women. It can also hinder progress in medical research by preventing the development of sex-specific treatment approaches.

Additionally, while the amount of research conducted on the behalf of women has grown in the past two decades, research involving pregnant women has been restricted.

This leads to a limited understanding of how best to medically care for pregnant women: for example, less than 10 per cent  of prescription medications have been studied enough to understand the impact in pregnancy on both the woman and her foetus.

While the NIH and American College of Obstetricians and Gynecologists (ACOG) both acknowledge pregnancy as a “medically complex” state that can alter metabolism of medications, and the course of various diseases, increased pregnancy-specific data needs to be collected to optimise the care of women in pregnancy.

Another recent, glaring case study: initial COVID vaccination trials did not include pregnant women, which led to restrictions on the availability of the vaccines as well as restrictions of the use in pregnant women with dire consequences – as unvaccinated pregnant women are more likely to develop severe COVID infections requiring ICU admissions and are more likely to develop other pregnancy-related complications like preeclampsia and preterm birth.

How do we move forward?

The exclusion of women from drug trials undermines efforts to ensure equitable and effective healthcare for all individuals.

It’s crucial for the government and pharmaceutical companies to put more resources and funding into women’s health so we can have a deeper understanding of how to treat diseases that impact over half of the population, for more female and diverse talent to enter the medical field – either as doctors, researchers, healthcare executives – and to incorporate how biological sex can affect medical treatment into provider education.

And, for pregnant women, the answer was proposed by ACOG back in 2015: “A more careful examination…points to the need for evidence-based consideration of pregnancy exposure in research rather than broad exclusion of all pregnant women”.

If evidence demonstrates minimal risk to the foetus as well as potential benefit to the pregnant woman, why should she be denied the right to give informed consent to enrol in a clinical trial?

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Opinion

‘Women are left in limbo’: how telemedicine can cut down NHS gynaecology waiting times

By Kat James, director of new projects at Consultant Connect

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Almost 600,000 people in England are waiting for gynaecology treatment. It is clear the current system is not fit for purpose.

The NHS, across the board, is struggling to reduce waiting lists, but gynaecology health, in particular, has been sent to the back of the queue.

Referral numbers are about 60 per cent higher than pre-pandemic, which represents one of the three highest specialties in terms of volume increase since pre-COVID.

Not only are women left feeling neglected, but longer wait times also result in them needing more complex treatment or even emergency admissions to hospital.

Then, there is also the impact on family life, work, and women’s mental health. A survey of the Royal College of Obstetricians and Gynaecologists found that four-fifths (80 per cent) of women said their mental health has worsened due to the wait and that one in four of those whose mental health had deteriorated, pain was given as a reason.

More than three-quarters (77 per cent) of women said their ability to work or participate in social activities had been negatively impacted.

One of the main stumbling blocks impacting patient waiting times is the disconnect between primary and secondary care. Often, patients who have faced long waits for their appointment are discharged after their first hospital appointment and told that their care is best taken care of by their GPs.

The good news is that new ways of working better connect primary and secondary care and ensure patients receive the right treatment first time. If applied at scale, these solutions considerably reduce waiting lists.

For example, giving GPs immediate access to speak to a consultant on the phone for specialist advice and guidance for their patient. In ordinary circumstances, a GP would have to call the hospital switchboard or send a written advice request which might take days to be answered.

Often, these queries would go unanswered or aren’t transferred to the correct department, resulting in patients being referred sometimes unnecessarily or presenting at a busy A&E department.

Technology like Consultant Connect allows GPs to directly “hunt down” a specialist consultant from a pre-defined rota for expert advice via a phone call, ensuring GPs can direct their patients to the right care first time. This service is available for gynaecology in almost 50 NHS areas across the country.

In Coventry, for example, a 54-year-old patient presented with obvious advanced gynaecological cancer. While the two-week wait referral had already been made, the GP couldn’t move the appointment sooner than 14 days later.

Meanwhile, the patient started deteriorating, and the GP considered an urgent admission. The GP used Consultant Connect and, within seconds, was connected to a gynaecologist, who then arranged for the patient to be scanned that day. The patient got the care they needed and avoided an acute admission.

In June 2023, the service expanded to cover a menopause advice and guidance line as referral data in one local area showed increased referrals relating to menopause-specific questions, many of which did not require to be seen in a hospital setting.

This meant that trusts weren’t seeing patients who needed to be seen, and patients with menopause symptoms were on waiting lists for a prolonged duration without management plans.

With the new Consultant Connect Menopause line, GPs can get through to a consultant with special interest in menopause matters within 26 seconds.

Data shows that 87 per cent of calls resulted in the GP receiving “enough” advice for their patient to benefit from an immediate treatment plan via their GP rather than waiting for a hospital appointment with a specialist unnecessarily.

Another way to tackle the wait problem is to leverage remote ways of working, which opens access to a new pool of workforce that otherwise wouldn’t exist.

Consultant Connect runs a network of NHS consultants who review gynaecology referrals remotely, with no need to travel to local hospitals and with consultants choosing their own working hours. This is often attractive to consultants who work part-time in hospital or are on parental leave, for example.

For patients, it means they get access to treatment plans faster: the remote working consultant determines the urgency of a referral and writes up a management plan, which means that treatment can start immediately.

Often, the health problem can be resolved through this plan, and for those still needing to be seen, it means they come to their first appointment on a more informed basis.

At the same time, it ensures patients are on the correct pathway, and any diagnostic test needed for a diagnosis are initiated in a timely manner.

Last year, Consultant Connect’s team triaged over 5,000 gynaecology referrals across the UK, resulting in 43 per cent of referrals being safely removed from the waiting list.

Many of these patients were returned to their GP with a treatment plan devised by the consultant. By fast-tracking urgent cases, women are not put through unnecessary stress and pain while waiting to be referred to a gynaecologist. Among these referrals, one in ten cases were upgraded to the urgent and suspected cancer pathways.

By reviewing current systems to make them more joined up and to allow for efficient ways of working, we can speed up care for women and make sure that clinicians have the right tools to help the NHS deal with the mounting gynaecology backlog.

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Opinion

‘We are not allowed to talk about our bodies’: why we need to address social media censorship

By Clio Wood, women’s health advocate and founder of &Breathe

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Social media censorship is just another example of women’s issues being sidelined and women being made, yet again, to feel small.

The gender data gap is huge and, if you’ve ever read the great Caroline Criado Perez’s book, Invisible Women, you’ll know what I mean. It touches every day of a female life.

That impact includes social media too. Because while the social media platforms are notoriously secretive about their internal workings, it’s a pretty safe bet that social media algorithms, like most of the rest of life, are built on male data and trained on male behaviours.

This means that as long as women have different behaviours and priorities of what they want to see on these platforms, we’re going to find it a struggle.

Meta and Tiktok are silencing women’s health and sexual wellbeing content. Censorship harms women’s health: it increases women’s pain, and disempowers women, which in turn means the gender health gap cannot close. What annoys you when you’re on your phone scrolling has long-lasting impact for us and our children.

I’ve experienced this censorship first hand on Instagram, with my reach being restricted for simply posting a body confidence reel of me dancing in a bikini.

That in itself – one example of many – is infuriating, but what’s especially galling is that everyday men’s health topics are left uncensored, and hyper sexualised women’s bodies, unsolicited “dick pics” and fake accounts using nearly naked female profile pictures are making their way into social media feeds and inboxes unchecked. The hypocrisy of the situation is clear.

All the while charities are being forced to use male nipples instead of female ones, and female-led period brands are losing hundreds of thousands of pounds when their ad accounts get deleted.

Creators, charities, medical practitioners and brands are being censored constantly through algorithms picking up words like sex, vagina, vulva, or period. Which are all normal human functions or body parts and integral to these creators’ missions. You can’t be a period care brand without talking about periods.

CensHERship aims to alter the trajectory of the current algorithms and end the routine censorship of women’s health content online

Creators end up using written symbols and numbers to disguise these words and bleep them out in speech to try to get around this censorship.

It’s examples like this that finally led me – after many years of finding this situation ridiculous – to do something about it.

Together with Anna O’Sullivan, we’ve created CensHERship, a campaign which aims to alter the trajectory of the current algorithms and hopefully restore some balance to what is allowed on social media. Our ultimate aim is to bring the platforms to the table for discussion by this time next year.

We launched a survey in late January 2024 to try to collect as much information as we can about the incidences of muting and censorship that female creators are experiencing, whether they are educators, charities, brands or medical professionals. The results emphasised that this is a widespread issue taking in all of women’s health and sexual wellbeing.

In tandem we hosted an intimate roundtable to launch the CensHERship campaign and found, to our astonishment, that the problem goes much deeper than social media. Women’s health and sexual wellbeing brands are being refused bank accounts, insurance and being kicked off payment platforms without warning.

Social media censorship is just the tip of the iceberg. It’s just one more example of women’s issues being sidelined and women being made, yet again, to feel small.

We’re not being allowed the freedom to talk about our own bodies and health, because speaking up goes against the male-gaze archetype of the female role and body. Let’s end CensHERship once and for all.

Clio Wood is a women’s health advocate, journalist, author and Founder of &Breathe.

Anna O’Sullivan is a communications and marketing professional and writes FutureFemHealth 

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