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Lack of NHS funding forces IVF patients into private care, says study

Research reveals a complex and overlapping system that contributes to inequalities in treatment experience

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The privatisation of UK healthcare services is creating unequal access to fertility treatment, researchers have said, leaving many people unable to afford the care they need.

The study, conducted by Queen Mary University of London, has shown that long NHS waiting lists along with the cost of living crisis are stopping people from starting families.

Only a fifth of the aspiring parents involved in the research could afford private fertility care, while 40 per cent said it would be just about possible with substantial financial planning. The remaining 40 per cent could not afford the treatment.

More than 50,000 people have fertility treatment every year in the UK, some as NHS patients but most paying privately, at prices from £3-5,000 for a standard IVF cycle to more than £20,000 with certain add-ons.

Although it is generally assumed that people struggling to conceive use NHS or private services, researchers have said this new study reveals a complex and overlapping system, where an initial round of IVF on the NHS often still leads patients into paying privately.

The findings have shown that while hopeful their treatment would work, participants knew that each round of IVF might not lead to a baby, and it was generally accepted by both patients and professionals that multiple attempts would probably need to be undertaken.

For many, the possibility that they might become private patients in the future involved substantial financial planning, coupled with worry about financial trauma.

One participant described how she was prepared for her funded IVF cycles not to be successful and started to save money, saying: “I thought, it’s going to cost us 16 grand in total to get two [private cycles of IVF]… I just needed that in my head, so I thought I could start saving, and so I’d be ready if it didn’t work.”

Dr Manuela Perrotta, study author and reader in technology and organisation at Queen Mary University of London, said: “Participants in our study went into fertility treatment expecting they may need to pay thousands of pounds for it, even if they were having NHS care.

“People know there is limited public funding for IVF, and each cycle has quite a low success rate which decreases further over time – so even if NHS care is available, it may not be enough.”

Many participants reported not being able to afford the costs of private IVF, and a lack of other options led some to make significant life changes in pursuit of the care they need.

One patient in the research moved 50 miles to be in a different catchment area with more supportive funding policies.

“I found out that if I lived in certain areas I would have had three rounds funded, so we moved [to another city] within about three weeks of finding that out and got the funding.”

The National Institute for Health and Care Excellence (NICE) recommends three cycles of IVF for women under 40, but access to treatment in the UK is determined by a patient’s home address and registered general practice, which can leave some unable to get help on the NHS.

This has led to an uneven provision of IVF treatment across different regions in the UK, with more funded cycles available in Scotland than in London and the east of England.

Paying for fertility treatment does not necessarily involve moving to a private clinic, the study has also suggested.

One patient described her first experience of private treatment being with the same consultant and at the same clinic as her previous NHS treatment.

Researchers have found that movement between NHS and private fertility care was often challenging for patients, with treatment options varying significantly from place to place.

Dr Josie Hamper, study author and post-doctoral researcher at Queen Mary University of London, said: “Our research shows that the boundaries between NHS and privately provided IVF are not as neat as they seem, and the hybrid public/private infertility landscape has had profound consequences for all IVF patients.

“The representation of a public/private divide contributes to inequalities in treatment experience, and does not reflect patients’ experiences of IVF in the UK.”

Sorina Mihaila is the Femtech World editor, covering technology, research and innovation in women's health. Sorina is also a contributor for the neuro-rehabilitation magazine NR Times.

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Lawyers warn of discrimination risks around lack of menstrual health support in the workplace

Employers should consider proactively supporting women in managing menstruation at work, lawyers have argued

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Employers should consider the potential discrimination risks around menstrual health in the workplace, lawyers have warned, as research shows that most women in the UK feel unsupported.

According to the Chartered Institute of Personnel and Development (CIPD), the majority of women in the UK do not feel a strong sense of support in their organisation in relation to their menstrual cycle.

Figures show women are more likely to feel supported by colleagues than by their employer or manager, with only one in 10 reporting that their organisation provides support for menstruation and menstrual health.

Annisa Khan, employment lawyer at Farrer & Co who has previously raised the alarm over the lack of practical measures to support women with their periods, told Femtech World that employers should be mindful of the legal risks related to managing menstruation.

“Under the Equality Act 2010, it is unlawful to discriminate against employees based on sex, age, or disability,” she said.

“Employers should therefore consider the potential discrimination risks in relation to managing mensuration in the workplace and implement measures to reduce these risks.”

A lack of workplace period policies has been estimated to cost businesses over £6bn per year, as menstrual symptoms cause women to miss an average of 8.4 days per year due to lower productivity.

Khan said organisations should consider proactively supporting employees in managing menstruation at work by reviewing existing policies, including sickness absence and health and wellbeing policies, to ensure they effectively address menstrual-related concerns.

“Creating an open and supportive environment is crucial for employees to feel comfortable discussing periods at work,” she explained.

“This involves raising awareness among all staff, including senior-level managers and male colleagues, to foster an understanding of how colleagues may be affected by menstruation, the relevant policies and how to have open and empathetic conversations.

“Implementing practical measures is also essential to create a supportive environment. Practical steps can include having accessible bathroom facilities with sanitary bins, providing free period products to employees, offering additional breaks and providing a quiet space for rest.”

In line with CIPD’s findings, Khan said workplaces should also consider implementing more flexible working practices and giving women more breaks when needed.

“Employers should be open to employees adjusting their work pattern on the days they are experiencing menstruation symptoms by, for example, offering employees the opportunity to work from home.

“Additionally, they should consider the needs of employees with disabilities or those with medical conditions, and how they may be affected by managing mensuration at work.”

Heidi Watson, employment partner at Clyde & Co, said employers should ensure they avoid breaching discrimination laws when approaching issues like menstrual health.

“As awareness of menstrual issues such as endometriosis grows and as employees are more willing to discuss their symptoms at work, employers will need to consider whether employees are disabled under the legal definition and therefore entitled to protection from less favourable treatment and subject to the duty of the employer to make reasonable adjustments for them,” she told Femtech World.

“Employees may also be able to establish sex or age discrimination claims. We can expect more claims to come before the Employment Tribunal in the not too distant future, in a similar way as we have seen with cases involving menopause in recent years.

“Adopting a flexible approach to managing those with menstrual symptoms which are impacting their work, and creating an open and supportive culture around the issue, will help to reduce the risk of such claims being brought,” she added.

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OB/GYN-founded vitamin company pledges US$10m to improve women’s health research

Perelel aims to close the divide on women’s reproductive health research and improve access to nutritional support

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Alex Taylor and Victoria Thain Gioia, co-founders of Perelel

The US OB/GYN-founded vitamin company Perelel has pledged US$10m to Magee-Womens Research Institute and Good+ Foundation to fund women’s health research and address gaps in maternal healthcare.

The vitamin company said the US$10m would be distributed as both in-kind product donations and funding grants through 2027 focused on advancing women’s reproductive health.

Magee-Womens Research Institute is the largest US research foundation focused exclusively on women’s health, reproductive biology and infant research and care.

Good+Foundation is a national nonprofit working to dismantle multi-generational poverty by pairing tangible goods with innovative services for under-resourced individuals.

“As the only female OB/GYN-founded women’s vitamin company, Perelel is committed to ensuring that all women have access to medically backed care,” said Victoria Thain Gioia, co-founder and co-CEO of Perelel.

“This is why we are devoted to furthering women’s research in partnership with Magee-Womens Research Institute and creating more equity in the way underserved communities receive critical prenatal micronutrients that would otherwise be inaccessible thanks to Good+Foundation.”

Research shows that medical studies have historically excluded female participants and data have been collected from males and generalised to females.

The exclusion of women of “childbearing potential” from clinical research studies has meant that women’s diseases are often missed, misdiagnosed or remain a total mystery.

Alex Taylor, co-founder and co-CEO and of Perelel, said: “We recognise how wildly complex women’s bodies are — bodies that have historically been oversimplified, objectified and shamefully under-researched in medicine.

“Unfortunately, it’s not as simple as ’12 essential nutrients.’ In founding Perelel, we hope to shine a light on how dynamic our bodies are by supporting them with targeted solutions made by the doctors and experts who know best.

“Core to what we stand for is the need to keep fighting for our fundamental rights and help close the women’s health research gap and improve body literacy.”

Perelel’s pledge comes at a time of intensified focus on women’s health as efforts start to reach new levels, including the White House, after President Joe Biden announced the first-ever initiative on Women’s Health Research in 2023.

“It is critical that there is more in-depth medical research done to support women at every hormonal life stage,” said Michael Annichine, CEO at Magee-Womens Research Institute and Foundation.

“Perelel has committed to a cash donation to further advance research into women’s reproductive health and to ensure that this research is made more accessible to doctors everywhere.”

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New treatment could ‘disrupt’ growth of breast cancer tumours

A new type of immunotherapy could lead to pioneering treatment for breast cancer

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A breakthrough injection could “disrupt” the growth of breast cancer tumours, paving the way for a pioneering new treatment.

Breast cancer is the most common cancer in the UK with one woman diagnosed every 10 minutes. Around 55,000 women in the UK are diagnosed with breast cancer every year and 11,500 die from the disease each year.

Researchers from the Institute of Cancer Research have found that a new type of immunotherapy that targets non-cancer cells could help prevent the growth and spread of breast cancer tumours.

The discovery, published in The Journal for ImmunoTherapy of Cancer, has found that an immunotherapy approach targeting a protein, called endosialin, disrupts the tumour’s blood supply and, as a result, can hinder its growth and spread.

Unlike most cancer treatments, this innovative treatment does not target cancer cells directly but attacks the cells that support the disease instead.

Researchers used a type of immunotherapy called CAR-T therapy, which involves removing a patient’s healthy immune cells and genetically modifying them to attack specific targets.

CAR-T therapies are already being used to treat some blood cancers, and scientists are trying to find ways to make them effective for other types of cancer, including breast cancer.

However, CAR-T cell therapy does not always work on tumours because their environment suppresses the immune response, and it can also be challenging to find specific features on the breast cancer cells to target.

To work around these challenges, the team directed the CAR-T cells to cells surrounding the tumour’s blood supply that make the endosialin protein, rather than actual cancer cells. In experiments in mice, scientists found that targeting endosialin successfully reduced the breast cancer’s growth and spread.

The team, based at the Breast Cancer Now Toby Robins Research Centre at The Institute of Cancer Research (ICR), also tested the treatment on lung cancer tumours in mice and saw similarly successful results, suggesting patients with other types of cancer could benefit from this new treatment too.

In addition, researchers found that the CAR-T therapy did not affect cells without endosialin, indicating this could work as a cancer-specific treatment with potentially fewer side effects for patients.

“This is the very first study that demonstrates the effectiveness of using endosialin-directed CAR-T cells to reduce breast cancer tumour growth and spread,” said Dr Frances Turrell, study co-leader and postdoctoral training fellow in the division of breast cancer research at the Institute of Cancer Research.

“Immunotherapy has had limited success in treating breast cancer but by targeting the cells that support the tumour and help it to survive, rather than the cancer cells directly, we’ve found a promising way to overcome the challenges posed by the tumour environment and develop a more effective and targeted treatment for breast cancer.

“We could not have done this project without funding to the Molecular Cell Biology group from Breast Cancer Now and we hope that further research will help translate these findings into targeted therapies for breast cancer patients.”

Dr Simon Vincent, director of research, support and influencing at Breast Cancer Now, said: “This exciting research could lead to much-needed targeted treatments for people with breast cancer, and with one person dying from breast cancer every 45 minutes in the UK, new treatments like these are urgently needed.

“Now we know that the treatment works in principle in mice, Breast Cancer Now researchers can continue to develop this immunotherapy to make it suitable for people, as well as to understand the full effect it could have and who it may benefit the most.”

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