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Opinion

“The gender pain gap hurts everyone – including the healthcare system and taxpayers”

By Cindy Moy Carr and Tami Wahl

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For decades a lot of ink has been spilled both online and in print about pain treatment disparities between men and women, often by the patients themselves.

One very famous case is that of actress comedienne Gilda Radner, who in her book Its Always Something described how she started experiencing acute exhaustion and pain in her upper legs in 1985 while filming Haunted Honeymoon in the United Kingdom.

She sought medical attention, and over the course of the next year, several doctors, the most of whom were in California, gave her differing diagnoses that ultimately turned out to be false. Several told her it was period pain and Epstein-Barr Virus which Radner herself referred to as fitting to “the Queen of Neurosis.”

For many like Radner, period pain has been blamed for what later turns out to be an unrelated illness or physical condition.

Radner continued to feel abdominal discomfort for 10 months. By the time they finally diagnosed her with Stage IV ovarian cancer in October 1986, the tumour inside her had grown to the size of a grapefruit.

Radner had a hysterectomy along with radiation and chemotherapy. Following remission and relapse, she died three years later at age 43. If only the doctors had listened and investigated all the possibilities sooner.

In November 2022, 33 years after the death of Radner, the first-ever gender pain gap report was released. The report, researched and compiled by Nurofen, based on a survey in the United Kingdom of 5,100 participants, analyses the differences in experience of pain for both men and women in the United Kingdom and found:

  1. 56 per cent of women surveyed, compared to 49 per cent of males, felt their pain was disregarded or neglected.
  2. One in four women vs one in six males reported having feelings that generally, no one took their suffering seriously.
  3. Of those that felt this way, 50 per cent said their GP and 27 per cent said their GP (the UK equivalent of a PCP) ignored or dismissed their pain, with partners/spouses (26 per cent) and friends (21 per cent) reacting in similar ways.
  4. Nearly two-thirds (63 per cent) of women believe that doctors and nurses discriminate against women and treat men’s pain more seriously.

The reasons it took so long for such a study are present in the results. The report states that the gender gap found in this study is probably a product of a “male as default” philosophy and historic practice that pervades research, clinical trials, healthcare policy and services.

It seems Radner wasn’t the only one who thought herself neurotic. The report also states that only 28 per cent of women who experience severe daily pain would seek consultation with their GP.

That trend continues with treatments for pain where 74 per cent of women would choose self-care over seeing an GP due to feeling ignored or dismissed compared to just 60 per cent of men. And almost a quarter (24 per cent) of the women surveyed also reported that pain had led to them feeling depressed, compared to 18 per cent of men.

These results, while shocking, are an everyday experience for most women we know.

The first study definitively proving the existence of menstrual pain was released by Harvard and Apple in March 2021. Women obviously knew menstrual pain existed, the pain simply wasn’t considered important enough to merit research funding.

In 1998 sildenafil citrate, later marketed as Viagra, was tested as heart medication and found to offer total relief for serious period pain over four hours. The review panel refused further research funding because cramps were not a public health priority.

In 2007 sildenafil citrate was found to help hamsters recover from jet lag. In 2013 sildenafil citrate was again shown to relieve menstrual pain but the study ran out of funding. Hamsters get priority over women.

More recently one of this article’s authors sought counselling for hypochondria after numerous doctors told her the mysterious ailments she was suffering, including debilitating migraines, dry eyes and vertigo, were psychosomatic.

It was a nurse who told her it was perimenopause. Simple hormone therapy solved years of symptoms.

Gender pain disparity is a safety issue

In 2020, the First Do No Harm report was published by the Independent Medicines and Medical Devices Safety Review, chaired by Baroness Julia Cumberlege.

The Review team spent two years speaking to more than 700 women and their families who experienced complications linked to three treatments–1) sodium valproate, an epilepsy drug that increases the risk of birth defects; 2) Primodos, a hormonal pregnancy test withdrawn from the market in 1978, allegedly associated with birth defects and miscarriages; and 3) pelvic mesh implants, used to treat prolapse and urinary incontinence, the complications of which can cause debilitating pain “like shards of glass inside the body”.

The 277-page report is an explicit and gut-wrenching read, laying out in minute detail the multitude and shocking ways in which patients – most of whom are women – were treated dismissively by the healthcare system with the resulting outcomes being just as severe, including job loss, breakdown of family life, children or husbands becoming carers for mothers or wives, and for women with children suffering from foetal valproate spectrum disorder, being accused of abuse by poorly educated clinicians.

On page 17 of the report, under the subtitle No-one is listening’ – The patient voice dismissed, the Review team writes: “They spoke of being ‘gaslighted’ and of not being believed, particularly in relation to pelvic mesh and the suffering of pain.

“Women, in reporting to us their extensive mesh complications, have spoken of excruciating chronic pain feeling like razors inside their body, damage to organs, the loss of mobility and sex life and depression and suicidal thoughts.”

The Review team goes on: “Some clinicians’ reactions ranged from ‘it’s all in your head’ to ‘these are women’s issues’ or ‘it’s that time of life’ wherein anything and everything women suffer is perceived as a natural precursor to, part of, or a post-symptomatic phase of, the menopause.”

The Review then explains some of the consequences of this treatment, including the increased costs to the UK taxpayer.

“We know that women who accept a normalisation of their pain tend to seek the help they need far later than they should,” they write.

“This precludes the possibility of early, less invasive treatment with potentially better outcomes. It also takes its toll, physically, mentally and emotionally on the patient and their family and imposes ultimately a far greater cost on the NHS and the healthcare system to treat and attempt to put right.”

What steps can we take to narrow the gap?

Nurofen’s study is a good start. They’ve also launched a website called named See My Pain where the stories of real women are posted.

Their parent company Reckitt Benckiser has also committed to several long-term initiatives that go beyond marketing to finally close the gender pain gap.

For instance, the business will invest in creating new tools to help both men and women describe and articulate their suffering while speaking with medical specialists.

Reckitt has also pledged to include gender balance when planning and analysing its clinical studies, provide training in identifying gender bias and will frequently review the Gender Pain Gap Index Report to monitor progress. (Note: The authors are not affiliated with Reckitt.)

These are all good first steps from a brandholder in the medical ecosystem.

Healthcare professionals could receive training in active listening techniques. Medical school curriculums and continuing education sessions could explore and raise awareness of the gap, which may initiate an openness and curiosity for students and physicians to look beyond defined conditions.

Patients should learn to be their own advocates. Today we have technologies, digital platforms, social media and online communities to better inform and empower an individual.

Perhaps if Gilda’s medical team was more curious or she had a broader support network with similar symptoms she wouldn’t have dismissed herself as “neurotic” and she’d still be here making us all laugh with her wonderful characters.

A longer-term and more involved measure is a comprehensive and macro-review of the healthcare model.

The system has become such a behemoth that medical discoveries and any sense of individualised treatments are ultimately limited if non-existent.

The existing model was built decades prior to the array of digital data and technologies that are available today. Is a complete overhaul needed or can the existing system be reconfigured to utilise and meet contemporary times?

A serious review would reveal best next steps to close the gender pain gap among other improvements.

The Nurofen report concludes on a practical note: “Closing the gap on pain will not only provide immediate solutions for women experiencing pain, but we hope will have a ripple-effect in terms of social and economic gains.”

More importantly, closing the gender pain gap will save lives and will absolutely improve the quality of life for women navigating pain.

 

Cindy Moy Carr is the founder and CEO of Vorsdatter Limited which developed mySysters, an app for perimenopause and menopause. She’s an attorney and journalist who authored the American Bar Association’s Guide to Health Care Law.

Tami Wahl serves as legislative and regulatory counsel for innovators across multiple industry sectors. 

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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‘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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