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#41

Research / Breaking Down Barriers: Who Wi...

Last post by mensfe_admin - 2022-12-14 12:05

by Dr Kirsty Horsey

The first session of the Progress Educational Trust (PET)'s 2022 Annual Conference 'Breaking Down Barriers: Who Will Lead the Way?' featured three eminent speakers working at the heart of fertility health policy, both nationally and internationally.

First to speak was Professor Dame Lesley Regan, professor of obstetrics and gynaecology at Imperial College London. Her talk, 'A Women's Health Agenda: Redressing the Balance' focused on the recently launched Women's Health Strategy for England and several related reports published in the past few years. Collectively, these 'shine a light on taboo subjects in women's health' and issues that 'really trouble women' – including access to fertility diagnoses and treatment. In working on these reports, she said, she had been 'struck by how ignorant many people were about problems women have trying to access care'.

She reflected on how the issues brought up in one report 'Better for Women' published by the Royal College of Obstetricians and Gynaecologists (RCOG) in December 2019 were later brought up again in 'A Women's Health Agenda: Redressing the Balance'. Professor Regan said that in her current role as Women's Health Ambassador, she will draw upon this work to encourage the UK Government to look again at IVF funding. According to Professor Regan, this should include provision of good quality information at all stages of the reproductive lifespan, including in schools, and wellbeing services promoting good health rather than relying on reactive measures suggesting proactive healthcare versus disease intervention.

Apart from highlighting continuing disparities for women seeking and accessing healthcare, Professor Regan told the audience that she has come to realise that if you seek change, this must be achieved by small incremental steps and you must be prepared to move things on slowly. Despite the fact she thought she had 'painted a rather gloomy picture', she was optimistic about the future and said she would hold the Government's 'feet to the fire'. She hoped that if she were asked to speak at a future event, she would be able to report on improvements and that 'the fertility side of the Women's Health Strategy would be becoming a reality'.

Dr Gitau Mburu, a scientist at the World Health Organisation (WHO)'s department of sexual and reproductive health and research, then spoke to the topic 'Achieving Universal Access to Fertility Care: A Global Perspective from the WHO'. He outlined how infertility and subfertility amount to a significant global burden and explained how this – plus disparities in provision and availability in relation to geography, GDP and other factors – have a negative impact on overall health, as well as gender equality. As part of the global health agenda, Dr Mburu also explained that responses to infertility are central to achieving sustainable development goals.

The WHO has created substantial resources and strategies over decades, most recently starting to develop guidelines on the prevention, diagnosis and treatment of infertility. While more than eight million babies conceived via IVF have been born worldwide, and we are now seeing the benefits of significant technological advances and greater availability of treatments, better awareness is needed of the confluence of advanced maternal/paternal age, fertility preservation needs, longer-term freezing, and a growing repertoire of experimental add-ons to existing interventions.

There are also implications for gender, reproduction and choice, safety, regulation, legal and equity of access issues related to fertility care, he said. The WHO's 2019 Global Health Policy Survey found that many countries have inadequate policy guidance on fertility care, coupled with differences in financial support (and therefore access) and regulation, which differs significantly even in the minority of countries where laws are in place. Additionally, there is a lack of fertility education and awareness, and an accompanying lack of access to good information.

Dr Mburu said that a comprehensive range of actions are needed to achieve universal access to fertility care. These include ensuring infertility features in national guidelines and policies on sexual/reproductive health, a comprehensive approach to fertility education and awareness to 'reach the unreached', and increased health system investments in fertility care on both the 'demand' (patients) and 'supply' (providers) sides. He ended by reminding us that fertility care is part of the right to health and a fundamental part of human rights and human dignity. Barriers still exist, he said, which must be addressed through national and international jurisprudence and operationalisation of already existing international commitments.

Finally in the session, we heard from Julia Chain, chair of the Human Fertilisation and Embryology Authority (HFEA). Beginning her talk 'The HFEA: Working to Improve Access and Outcomes for All', she explained that upon beginning her role in April 2021, she was 'optimistic and ambitious that the HFEA could help reduce inequalities in access to and outcomes in fertility treatment' and that the law could be modernised to reflect modern medical practice, social changes and expectations. Linking back to Professor Regan, she added that while she remains optimistic, it is 'a little frustrating that real change always takes longer than one expects'.

Chain explained that by law all licensed treatments and outcomes must be reported to the HFEA. Its register is the largest of its kind and, she said, has been used in recent years to 'shine a light on some of the inequalities we know exist', including geographical discrepancies in provision, differences related to relationship status or family type, and the fact that people from ethnic minority backgrounds have lower success rates following fertility treatments, with black patients having the lowest chances of success. Such inequalities extend further, she explained, pointing out that ethnic background also affects access to sperm and egg donation and the availability of donated gametes, as highlighted in a report published earlier this month.

To help rebalance these inequalities, Chain said there were key areas the HFEA wants to see addressed. First, there must be good access to information about both fertility and infertility. This should include the 'creation of new information flows to support and engage GPs, practice nurses and patients and the promotion of fertility education materials to support people, ideally before they become "patients"'. Because GPs are the first port of call for many people needing treatment, access to appointments, GP education and information are crucial. White patients are more likely to speak to a GP sooner when trying and failing to conceive. This may contribute to inequalities in outcomes that we already know about, don't yet fully understand, but must take steps to address.

Second, Chain said that although outside the HFEA's remit, fertility funding – including significant differences in regional NHS funding for IVF – must be addressed. Long NHS waiting lists affect couples' chances, as many are forced to delay starting treatment. Additionally, the likelihood of funding reduces with age, and there is a serious lack of funding for same-sex female couples and single women. Linked to funding, the cost-of-living crisis will impact those who are planning or wish to undertake fertility treatment. Third, she highlighted changes to family structures and the increasing number of treatments provided outside the typical 'patient with a male partner' model, including increasing numbers in female same-sex relationships, or patients with no partner. Issues such as 'shared motherhood' and the use of gametes from HIV+ patients raise particular issues for which legal solutions are being sought (see BioNews 1155).

Finally, Chain explained that changes to the Human Fertilisation and Embryology Act, the legislation governing the provision of licensed fertility treatment across the UK, are still intended. While the HFEA had hoped to consult on this by now, 'wider political turmoil' has caused this to be delayed until 2023. Returning to optimism, Chain said that she is 'determined to get proposals before parliament at the earliest opportunity possible'. Of course, she added, the HFEA can't do this alone, and works with other organisations in the fertility sector – including the British Fertility Society, the RCOG and Fertility Network – on how to reduce inequalities. The HFEA looks forward to working closely with Professor Regan on related aspects within the Women's Health Strategy.

Some lively questions from the audience followed the presentations, where all speakers were drawn back to common themes. All viewed education about fertility and infertility as key, across the board. This extends to related areas in, but not limited to, women's health - including menstrual healthcare, diagnosis and treatment of pelvic pain, and even abortion.

Getting the information out is key, and while there is obviously a role for health professionals and educators in doing this, there is also a need to communicate with younger people in modern ways (such as via TikTok). All speakers were also united on the need for collection and dissemination of good quality data, as this helps to identify where inequalities are, both nationally and globally. Finally, the need to keep up with changing social and cultural norms was highlighted as important, both across the globe and at home.

PET would like to thank the sponsors of this session (the Edwards and Steptoe Research Trust Fund) and the other sponsors of its conference (the Anne McLaren Memorial Trust Fund, ESHRE, Vitrolife, Born Donor Bank, CooperSurgical, Ferring Pharmaceuticals, Merck, Theramex, TMRW Life Sciences and the Institute of Medical Ethics).

Register now for PET's free-to-attend online events in 2023:

Your Guide to Genetics and Genomics in the Fertility Clinic (18 January 2023)
100 Years of Daedalus: The Birth of Assisted Reproductive Technology (1 February 2023)
Understanding Miscarriage: Pregnancy Loss after Fertility Treatment (15 February 2023)
When to Stop Storage: Improving Conversations About Unused Embryos (1 March 2023)
Flying the Flag for Fairness: How Do Countries Compare?
by Dr Eleanor Taylor

Professor Carlos Calhaz-Jorge, chair of the European Society of Human Reproduction and Embryology (ESHRE), was the session chair for the second session of the Progress Educational Trust (PET)'s 2022 annual conference.

The first presentation was 'Turkey: Restricted Access to Assisted Reproduction' by Dr Mete Işıkoğlu, gynaecologist at the Gelecek Centre for Human Reproduction in Turkey. Dr Işıkoğlu explained how the reproductive medicine sector in Turkey has expanded over the past thirty years since the first fertility clinic opened in 1988. Following the introduction of state funding for some forms of fertility treatment in 2005, the number of clinics has grown exponentially. However, this funding is restricted to married heterosexual couples.

Assisted reproduction as defined within Turkish legislation, includes any treatment in which a woman's egg is fertilised by her husband's sperm, and stipulates that any embryos created outside the body can only be transferred to the relevant woman's womb. All forms of third-party reproduction, such as gamete donation, embryo donation or surrogacy, are strictly prohibited. Further legislation introduced in 2010 states that anyone travelling outside of Turkey to access third-party reproductive treatment, and anyone who facilitates such cross-border treatment, will be 'reported to the state prosecutor'.

While this legislation restricts access to fertility treatment for many people within Turkey, Dr Işıkoğlu explained that it does not necessarily reflect the views of the general public within the country. One recent study suggests that only 15 percent of the population strongly objected to egg donation, for example.

Dr Işıkoğlu hoped that in the future, Turkish legislation would adapt to permit third-party reproduction, and also that the state would fund more forms of fertility treatment (such as egg freezing). He explained that funding needs to cover the full cost of treatment, because wages in Turkey are low compared to the cost of IVF and other treatments, making these treatments unaffordable for many.

In the second talk of the session Dr Diane De Neubourg, head of Antwerp University Hospital's Centre for Reproductive Medicine, shared her experience of working as a reproductive medicine specialist in her talk 'Belgium: Liberal Access to Assisted Reproduction'.

Perhaps the most impressive aspect of the Belgian fertility sector is the high level of government funding available to Belgian citizens who require treatment: they can access 90 percent funding for up to six IVF cycles, with patients paying the remaining cost – approximately €400 per cycle. This funding is available to women up to age 43.

Dr De Neubourg explained that this funding was introduced when the Belgian government recognised the medical and financial challenges that multiple pregnancies bring. Hoping that by providing a financial incentive for patients to have a single embryo transfer, it would be possible to reduce the number of multiple births and associated complications, the government agreed to cover 90 percent of the treatment costs on the condition that the fertility clinics would halve the rate of multiple births.

This deal seems to have been very successful, as the multiple birth rate from fertility treatment is now consistently less than ten percent in Belgium and the cumulative live birth rate from treatment is high. Interestingly, despite the offer of six funded cycles, Dr De Neubourg reported that there was a high dropout rate from treatment. Indeed, more than a quarter of patients do not return for a second IVF cycle if their first cycle is unsuccessful, which perhaps suggests that even if you remove a significant proportion of the financial burden of treatment from patients, the emotional and psychological burden should not be underestimated.

The third talk was entitled 'Germany: Restrictions on Egg Donation' and was presented by Dr Andreas Tandler-Schneider, gynaecologist at the Fertility Centre Berlin. Despite Germany and Belgium being neighbouring countries, the regulation and funding of fertility treatment in these two countries is vastly different. Fertility specialists in Germany are required to adhere to the 1990 Embryo Protection Act, which – as the name suggests – was designed to protect the status of the embryo, rather than to maximise safety for the patient or resulting child(ren).

The Embryo Protection Act creates a number of obstacles for fertility specialists. Any clinician who 'attempts to fertilise more egg cells from a woman than may be transferred to her womb within one treatment cycle' may face up to three years' imprisonment. German fertility specialists have had to find creative ways of performing treatment cycles to comply with the Act – or at least, work within a 'grey area of the law' – without significantly compromising success rates. Impacts on clinical practice include reluctance to grow many embryos to the blastocyst stage, and apprehension around freezing surplus blastocyst-stage embryos. As a result, there is a high multiple birth rate, as two embryos are transferred in more than half of the treatment cycles performed in Germany.

Interestingly, while sperm donation is permitted in Germany, egg donation is strictly prohibited and – again – is punishable by imprisonment. As a result, many patients travel abroad to access treatment with donor eggs. Dr Tandler-Schneider highlighted some of the risks involved, such as high travel costs, language barriers, the use of anonymous donors, and questionable practices such as transferring three or more embryos at a time.

The final talk was entitled 'Italy: Where Liberal Access Meets Practical Difficulties' and was presented by Dr Giulia Scaravelli, director of the Italian National Assisted Reproductive Technology Register. Despite the use of the word 'Liberal' in Dr Scaravelli's title, fertility treatment in Italy is limited to heterosexual couples. Treatment is not permitted for same-sex couples or single women, while surrogacy and egg donation are also strictly prohibited.

Both Dr Scaravelli and Dr Tandler-Schneider described funding and legislation issues that are very familiar to those that work in the UK fertility sector. Patients in Germany and Italy face a 'postcode lottery', just as English patients do when trying to access state funding for fertility treatment.

Discussions of UK law during other sessions of the conference were echoed here, by the panellists' frustrations at slow-moving governments when trying to initiate change at a legislative level. The laws that currently govern the use of fertility treatment in these European countries arguably no longer reflect the social, political and religious views of the public, but there does not seem to be a fast or efficient way of modernising the legislation to remedy this.

Overall, these four talks made me appreciate that fertility treatment in the UK is accessible to a diverse range of people regardless of their marital status, sexual orientation or gender identity. However, patients here could benefit from more generous state funding like that offered by Belgium, and from government policies that appreciate the long-term benefits of funding for fertility treatment.

#42

General Discussion / The publication of the HFEA's ...

Last post by mensfe_admin - 2022-12-10 10:31

2023

This report has come at an important time. Regulations passed in 2005 have given most donor-conceived people the right to access identifiable information about their donor when they turn 18.

There are around 200 donor-conceived people who are turning 18 in 2023 and who will be eligible to apply for identifying information about their donor for the first time. However, it is impossible to predict just how many will apply and who will then try to make contact with their donor.

Opening the Donor Conceived Register is another time stamp in the history of egg, sperm and embryo donation. Fertility is a specialty that never stands still. It will be fascinating to see how patients, family formations and other aspects of donation highlighted in this report, evolve further in another 30 years' time.

You can find out more about the rise of donation, the availability of donors, their changing characteristics and how family formations have evolved in the HFEA's Trends in Egg, Sperm & Embryo donation report.

Information is key when thinking about or going through fertility treatment. The HFEA supports patients by providing free, clear, and impartial information about fertility treatment, clinics and egg, sperm and embryo donation. Find out more at www.hfea.gov.uk.

#43

Research / The evolution of egg, sperm an...

Last post by mensfe_admin - 2022-12-10 10:26

A sign of a specialty that never stands still
by Julia Chain

The speed at which fertility treatment has evolved over the last 30 years is nothing short of incredible. The rapid scientific and technological advancements achieved in this time has given the 620,000 patients who have had IVF or donor insemination, much-longed-for hope, that one day they will conceive a child of their own.

In 2023, the landscape of egg and sperm donation will change as the first cohort of donor-conceived people affected by the 2005 change to donor anonymity law, will be eligible to access identifying information about their donor. This, along with an analysis of donor treatment numbers, of donor registrations and their changing characteristics, is highlighted in the new Trends in Egg, Sperm and Embryo Donation report, published by the Human Fertilisation & Embryology Authority (HFEA).

The report has shown the dramatic increase in children born through egg, sperm and embryo donation over time. The number of children born with the help of a donor has nearly doubled since the 1990s with over 4100 children born in 2019 compared to around 2500 in 1993. Over 70,000 donor-conceived children have been born since 1991 and egg, sperm and embryo donation accounts for one in 170 of all births and for one in six births using IVF in the UK.

The largest proportion of births are from treatments using donor sperm, followed by egg donation. Births from treatments using donor embryos are least common but have increased from under 50 births in 2010 to over 200 births in 2019.

The number of children born from donor sperm has more than tripled over the last 15 years, from under 900 in 2006, and growing to over 2800 in 2019. This increase is largely due to female same-sex and single people having treatment.

'Offer of hope'

In addition to the change in family type with more single parents and same-sex couples having children, we know that donation can dramatically increase an older patient's chance of success. As birth rates decline with age when women use their own eggs, older women can increase their chances of having a baby by using donor eggs. In 2018/19, the birth rate per embryo transferred for patients aged 18-34 using their own eggs was 33 percent, compared to below five percent for patients aged 43-50. However, birth rates remained above 30 percent for all ages when donor eggs were used; a statistic that means we must question how many older patients are being encouraged to have treatment with their own eggs, when using donor eggs may provide a much higher chance of success. We recognise that this is a very complex and emotionally charged issue.

Disparities

The HFEA's Trends in Egg, Sperm and Embryo Donation report shows that IVF treatments using donated sperm or eggs are less commonly funded through the NHS. From 2016-2020, just 13 percent of donor treatments were funded by the NHS compared to around 40 percent of IVF treatments without donation.

We know that same-sex couples are increasingly using donor IVF treatment and they often can't access NHS funding unless they've had at least six rounds of unsuccessful intra-uterine insemination (IUI). The government published its long-awaited Women's Health Strategy this year which committed to putting a stop to this requirement (see BioNews 1152). This is a really important commitment, and we are engaging with the Department for Health and Social Care about this regularly.

We also know that in recent years sperm imported into the UK has increased; sperm from mixed, other and black ethnicity donors were more likely to be imported than sperm from Asian and white donors.

The availability of donor sperm or eggs depends where in the UK you live and so it is possible that the increase in imported donors is in response to a lack of ethnically diverse donors available in the UK, or a result of patient choice, as well as long waits in some areas. In response to our National Patient Survey 2021, 82 percent of patients who had used donor eggs, sperm or embryos said it was important that the donor's ethnicity matched their own. However, some ethnic minority patients found it difficult to find donors matching their ethnicity.

This shortage of sperm from men from certain ethnic minority backgrounds could relate in part to cultural and/or religious beliefs, as well as stigma around donation in these communities. It could also be due to general lack of awareness around donation in these specific areas.

2023

#44

General Discussion / The evolution of egg, sperm an...

Last post by mensfe_admin - 2022-12-10 10:25

The speed at which fertility treatment has evolved over the last 30 years is nothing short of incredible. The rapid scientific and technological advancements achieved in this time has given the 620,000 patients who have had IVF or donor insemination, much-longed-for hope, that one day they will conceive a child of their own.

In 2023, the landscape of egg and sperm donation will change as the first cohort of donor-conceived people affected by the 2005 change to donor anonymity law, will be eligible to access identifying information about their donor. This, along with an analysis of donor treatment numbers, of donor registrations and their changing characteristics, is highlighted in the new Trends in Egg, Sperm and Embryo Donation report, published by the Human Fertilisation & Embryology Authority (HFEA).

The report has shown the dramatic increase in children born through egg, sperm and embryo donation over time. The number of children born with the help of a donor has nearly doubled since the 1990s with over 4100 children born in 2019 compared to around 2500 in 1993. Over 70,000 donor-conceived children have been born since 1991 and egg, sperm and embryo donation accounts for one in 170 of all births and for one in six births using IVF in the UK.

The largest proportion of births are from treatments using donor sperm, followed by egg donation. Births from treatments using donor embryos are least common but have increased from under 50 births in 2010 to over 200 births in 2019.

The number of children born from donor sperm has more than tripled over the last 15 years, from under 900 in 2006, and growing to over 2800 in 2019. This increase is largely due to female same-sex and single people having treatment.

'Offer of hope'

In addition to the change in family type with more single parents and same-sex couples having children, we know that donation can dramatically increase an older patient's chance of success. As birth rates decline with age when women use their own eggs, older women can increase their chances of having a baby by using donor eggs. In 2018/19, the birth rate per embryo transferred for patients aged 18-34 using their own eggs was 33 percent, compared to below five percent for patients aged 43-50. However, birth rates remained above 30 percent for all ages when donor eggs were used; a statistic that means we must question how many older patients are being encouraged to have treatment with their own eggs, when using donor eggs may provide a much higher chance of success. We recognise that this is a very complex and emotionally charged issue.

Disparities

The HFEA's Trends in Egg, Sperm and Embryo Donation report shows that IVF treatments using donated sperm or eggs are less commonly funded through the NHS. From 2016-2020, just 13 percent of donor treatments were funded by the NHS compared to around 40 percent of IVF treatments without donation.

We know that same-sex couples are increasingly using donor IVF treatment and they often can't access NHS funding unless they've had at least six rounds of unsuccessful intra-uterine insemination (IUI). The government published its long-awaited Women's Health Strategy this year which committed to putting a stop to this requirement (see BioNews 1152). This is a really important commitment, and we are engaging with the Department for Health and Social Care about this regularly.

We also know that in recent years sperm imported into the UK has increased; sperm from mixed, other and black ethnicity donors were more likely to be imported than sperm from Asian and white donors.

The availability of donor sperm or eggs depends where in the UK you live and so it is possible that the increase in imported donors is in response to a lack of ethnically diverse donors available in the UK, or a result of patient choice, as well as long waits in some areas. In response to our National Patient Survey 2021, 82 percent of patients who had used donor eggs, sperm or embryos said it was important that the donor's ethnicity matched their own. However, some ethnic minority patients found it difficult to find donors matching their ethnicity.

This shortage of sperm from men from certain ethnic minority backgrounds could relate in part to cultural and/or religious beliefs, as well as stigma around donation in these communities. It could also be due to general lack of awareness around donation in these specific areas.

#45

General Discussion / 30 Years of ICSI: An Injection...

Last post by mensfe_admin - 2022-11-08 09:13

by Melinda Van Kerckvoorde

Thirty years on from the first birth resulting from intracytoplasmic sperm injection (ICSI), PET's recent discussion event '30 years of ICSI: An Injection of Hope for Male Infertility' invited a panel of experts to discuss the past, present, and future of the technique.

PET's director, Sarah Norcross chaired the event. She began by explaining how after the first IVF baby was born in 1978, poor IVF success rates came to be associated – in part – with infertility that was partially or wholly attributable to the male in a couple, otherwise known as male-factor infertility.

A solution came 15 years later with the invention of ICSI which, instead of mimicking natural conception by surrounding an egg cell with sperm sperm cells in a dish (conventional IVF), uses a tiny needle to inject a single sperm into the egg's interior. ICSI has helped millions of couples worldwide to conceive.

The first speaker was ICSI pioneer André Van Steirteghem, now emeritus professor at the Free University of Brussels (VUB), who described how his team developed ICSI while trying to perfect a different technique (see BioNews 1162). In the mid-80s Professor Van Steirteghem's group accidentally found that, in contrast to earlier research in mice, normal fertilisation and embryo development in humans occurred when sperm is inserted into the egg's cytoplasm.

Following the first birth of an ICSI-conceived child in 1992, the technique's use in patients with severe male-factor infertility resulted in success rates similar to conventional IVF, and offered an alternative for couples who otherwise would have had little option but to use donor sperm.

Professor Van Steirteghem explained how ICSI offers an advantage when performing pre-implantation genetic testing. While sperm remains or cumulus cells are often the cause of contamination during conventional IVF, ICSI reduces the chance of contamination when performing an embryo biopsy.

Key to the advances made since ICSI was established is the way the research team in Brussels shared their work with peers, which was somewhat unusual at the time (and is even more unusual now), highlighting the importance of collaboration in research.

The second speaker was Dr Morven Dean, a trainee clinical embryologist at the Assisted Conception Unit in Dundee's Ninewells Hospital, who talked about the use of ICSI in current clinical practice. She outlined scenarios where there is strong evidence justifying the use of ICSI: severe male-factor infertility when patients present low sperm quality and motility, as well as to fertilise cryopreserved or in vitro matured oocytes, and to prevent contamination during pre-implantation genetic testing. In patients with only mild male-factor infertility, the evidence for using ICSI is mixed.

However, Dr Dean showed figures indicating that globally ICSI is used more than conventional IVF: two-thirds of assisted reproduction cases worldwide used ICSI in 2011. Often these are cases for which little to no evidence exists for ICSI being superior, such as for couples with unexplained infertility, advanced maternal age or low oocyte yield, or even for no particular reason.

Dr Dean also explained that ICSI's overuse might be linked to clinicians' fear of total fertilisation failure – when none of the eggs retrieved in a cycle successfully form an embryo – for which the risks seem to be lower when using ICSI (two percent vs five percent in standard IVF).

The future challenges of ICSI were further discussed by Professor Christopher Barratt, who is head of Reproductive Medicine at the University of Dundee. He highlighted many basic questions in the field of male reproductive health, like what is causing the decline in sperm count (see BioNews 911), which remain to be addressed.

Robust diagnostic tests to measure the incidence of male infertility are still needed, and there is also a lack of consensus on how to detect sperm damage. Taking the example from the collaborative approach which enabled the fast vaccine roll-out during the global pandemic, Professor Barratt highlighted the need for more large-scale studies to answer these important questions. He also introduced promising initiatives which aim to collect high-quality data on a global scale to measure, for example, the significant gap in research funding spent for reproductive health.

The final speaker, Professor Barbara Luke, from the Department of Obstetrics, Gynaecology and Reproductive Biology at Michigan State University, presented her work on the largest population-based study in IVF children in the United States. This research suggested an increased risk in birth defects and childhood cancer following conception using ICSI. Whereas male-factor infertility has remained stable in the past two decades, the use of ICSI has increased approximately ten percent.

By comparing more than 165,000 IVF-conceived children with over 1.3 million naturally conceived children born across four American states, Professor Luke and her colleagues found that the overall rate of cancer was higher in IVF children. Furthermore, ICSI, in combination with male-factor infertility, led to an increased risk of non-chromosomal, blastogenic, cardiovascular and genital-urinary defects after birth. She listed epigenetic changes, freeze-thawing of embryos and subfertility factors as some possible causes.

Chairing the Q&A panel discussion, Norcross, introduced medical genetics professor Inge Liebaers from the Free University of Brussels (VUB), who is an expert on preimplantation biomarkers and diagnosis. Being asked to briefly comment on Professor Luke's study, she reiterated the hurdles of studying several factors in these prospective studies, to understand if and how assisted conception negatively impacts later life.

The first question asked by an attendee was whether advising men with fertility issues to adopt a healthier lifestyle and diet could improve sperm quality. While agreeing that such changes might have a positive impact, at least up to a point, the speakers argued that more support is needed in IVF clinics to help patients make these changes.

Queried about a potential link between the overuse of ICSI and the rise of autism spectrum disorders among children, the panel agreed that not enough is known at present, and that more funding is required to conduct follow-up studies.

Professor Luke observed that fertility treatments are continuously changing, which makes it difficult to answer the question of whether the underlying conditions in infertile couples could predispose future children to diseases such as cancer.

Dr Dean was asked how to incentivise laboratory managers to offer the most appropriate IVF procedure, regardless of the increased financial benefit to the clinic of using procedures such as ICSI. She reiterated that the habit of using ICSI as a safety blanket in IVF clinics, due to fear for treatment failure, could be overcome by conducting more clinical trials and rebuilding trust in conventional IVF. Furthermore, the panel discussed the importance of communication between clinicians and embryologists, when it comes to explaining the success or failure of treatment.

During the final part of the Q&A, the panel discussed the need to find better ways to explain risk to patients, perhaps via more counselling. Finally, after Professor Van Steirteghem warned the panel about the increasing domination of financial interests in the medical world, Professor Barratt concluded that more consistent collaboration and research funding is the only way forward.

Overall, the story of ICSI teaches us a great lesson about the importance of openness and collaboration in advancing assisted reproduction. Only more diligent research and practice will tell when, and for whom, ICSI is appropriate.

#46

General Discussion / The journey from fertility to ...

Last post by mensfe_admin - 2022-11-02 09:33

Comment
Becoming pregnant following fertility treatment is both joyous and challenging for the person concerned and their partner, support network and family. The Royal College of Nursing (RCN) became aware of the concerns raised by fertility nurses, midwives and patient groups that the journey from fertility to maternity care is not always easy or smooth, and that guidance was needed.

As a result, the RCN invited a wide range of stakeholders (including Progress Educational Trust, Fertility Network, British Fertility Society and others), to collaborate and create guidance addressing the needs families may have as they move from fertility care to maternity services. In September 2022, the RCN published Transitions from Fertility to Maternity Care as a result of this work.

The stress of becoming pregnant and keeping a pregnancy causes anxiety for many, not just those who have been through fertility treatment. Regardless of where the woman is in that journey, the reality of being pregnant and what that means for the future can be difficult to comprehend. For those who have had fertility treatment, this emotional turmoil is further compounded by the difficulties sometimes experienced when moving from fertility to maternity services, at a time when good continuity of care is critical to physical and emotional well-being.

The time taken for people to access fertility care varies, and it often takes a number of years to achieve a successful pregnancy, especially if fertility treatment is due to a medical condition. If the treatment has been for non-medical reasons, the journey can be quicker, but is still challenging for those involved in it. NHS funding for fertility care remains a major issue in some areas.

Once a pregnancy has been confirmed, the patient will be discharged from the fertility services, usually at less than six to eight weeks into the pregnancy. They are advised to book an appointment with the local midwife, but that can take several weeks to materialise as the first booking in appointment normally occurs at around 12 weeks. They can be left between professional support, moving from what has often been an intensive service to possibly nothing – not knowing who to contact if they are anxious, ill or concerned. This gap in service provision will vary from service to service, and across the UK. Consequently, it is important that when women are discharged from fertility care they are given written information about their local services.

Most people will move from fertility to maternity care with relative ease, even with a gap in services, however, others may experience problems, including vaginal bleeding, abdominal pain, pregnancy-related nausea and vomiting, hyperemesis, ectopic pregnancy, molar pregnancy and miscarriage, and some will also require support at:

early pregnancy care (EPC) units,
emergency care, including out-of-hours/GP services and walk-in centres,
termination of pregnancy services.
Any potential problem may be distressing, consequently, access to a local EPC unit is important for the mental and physical well-being of the woman (and her partner). EPC units are well established in a number of NHS trusts across the UK and should be the first point of contact to support needs during this time. The Association of Early Pregnancy Units lists over 200 EPC units across the UK.

It is important to acknowledge that there is a wide variation in the fertility journey, which may have involved lengthy treatment and patients will have different emotional needs. Those who have had IVF or treatment with donated gametes to become pregnant should have been offered counselling, which may or may not continue once a pregnancy has been confirmed.

During this time, some women may also have had changes in their personal circumstances with physical or mental health, or socioeconomic issues arising. Even though they have had fertility treatment to achieve a pregnancy, they may consider/choose termination of pregnancy. Anyone who chooses this option must be supported to make decisions about their pregnancies according to their own circumstances, free of judgement, regardless of the process they have experienced to become pregnant, acknowledging that this decision can be complex.

Maternity care is very much about understanding the person who is pregnant, what their needs and expectations are, and this should take account of the journey they have been on. This also requires consideration of differing family structures, and not making assumptions about the person. This guidance acknowledges and identifies details for care that may be considered for patients and their families from the LGBTQIA+ communities, who may have different needs. Equally not all those who become pregnant will identify as women. Some women will come with a surrogacy arrangement in place, and there are care pathways identified to best support the woman and intended parents, which can be found in the guidance. It is always best to ask about the journey, and plan care accordingly. Several potentially useful contacts are listed in the guidance.

The quality of care provided to pregnant women is really important and all services try to achieve that high standard, however service configuration can challenge this, in particular the need for good continuity of care between the three services, and there is always room for improvements. Fertility care, EPC and maternity services need to work collaboratively to reduce the gap in services that some women experience. This could take the form of more formal links and service-level agreements, which would require more integration of the service. It is imperative that fertility nurses understand the onward journey, while midwives have confidence in their understanding of the individual's history.

Overall a greater awareness of the gap in services requires an understanding of EPC services in the local area. Healthcare professionals need to work together to ensure that women have continuity of care and know who the first point of contact ought to be, should an issue arise. The RCN guidance provides information and ideas on how this can be better achieved.

#47

General Discussion / Inventing ICSI

Last post by mensfe_admin - 2022-10-17 07:59

inventing ICSI

At the end of the 1980s it become obvious that conventional IVF was a good solution for couples with female factor infertility, but not for couples where the sperm count was too low. The remaining solution for these couples was to use artificial insemination with donor sperm. Several groups asked the question how we could better assist the fertilisation process when male infertility was preventing conception.

Micromanipulation procedures were introduced: The two initial assisted fertilisation procedures: zona drilling and partial zona dissection were not successful in humans. Around that time a few case reports were published on another assisted fertilisation procedure: subzonal insemination (SUZI) involving the insertion of a few spermatozoa between the zona pellucida and the membrane of the oocyte, helping it to enter the egg. We decided to explore the scope of this approach for assisted fertilisation at Brussels IVF.

Thanks to a grant from the Fund for Scientific Research – Flanders we investigated in mice whether the enhancement of the acrosome reaction (which is when the sperm cell releases enzymes necessary to enter the egg) of mouse sperm resulted in fertilisation and embryo development after a single 'treated' sperm was injected subzonally, underneath the outer protein layer of the egg. Our hypothesis proved to be correct: good rates of fertilisation and embryo development occurred, many normal pups were born and they were able to reproduce.

These experimental results led us to consider introduction of SUZI into the clinic for patients that had failed several cycles of conventional IVF. Ethical approval was asked for and obtained from the VUB Hospital Ethical Committee under the condition that all pregnancies and children born would be part of a thorough follow-up programme. Patients were fully informed and agreed to the follow-up programme including a prenatal diagnosis.

Clinical SUZI was started and a number of pregnancies and births occurred following use of the procedure. The technical procedure is delicate and sometimes one of the sperm entered into the cytoplasm of the oocyte. We noticed that this 'failed SUZI' led to normal fertilisation and initial embryo development. In cases where the only available embryo was after 'failed SUZI', it was transferred. We called this procedure ICSI.

The first ICSI child was born on 14 January 1992, following the transfer of a single 'failed SUZI' embryo, created after fertilisation failed on 11 other oocytes from the couple. In the following period, we were able to demonstrate that ICSI was more efficient than SUZI and from July 1992 we only applied ICSI in patients in need of assisted fertilisation.

We deliberately choose to share our experience widely with our peers and thereafter ICSI was performed in many centres worldwide and ICSI has been mushrooming.

The proportion of IVF cycles that use ICSI varies significantly by region, being much more common in the USA than it is in Europe, for example. Around 70 percent of all IVF cycles globally use ICSI, suggesting it is widely used for non-male factor infertility. Failure of previous IVF cycles is often the reason for using ICSI. Many patients prefer to use ICSI in countries where only a limited number of cycles are reimbursed by social security or where no reimbursement is in place as success rates are perceived to be higher than conventional IVF rates.

ICSI proved to treat infertility in couples with severely impaired sperm, including cryptozoospermia. For these patients, ICSI results were similar to conventional IVF treatment for patients without male factor infertility. ICSI using sperm that had been surgically removed from the epididymis or testes could also solve the problem in patients with obstructive azoospermia. Patients with non-obstructive azoospermia can also be helped if sperm cells can be found by testicular sperm extraction but the chance to have a child in couples where the male partner has non-obstructive azoospermia is low. However, most of these couples will embark on treatment even after full counselling before considering the use of donor sperm.

At BrusselsIVF, ICSI is also used on in vitro matured oocytes following culture of immature oocytes with the cells that surround it collected from antral follicles in polycystic ovary syndrome patients. For couples undergoing PGT with biopsy of day three cleaving embryos or day five or day six blastocysts, ICSI is still the preferred procedure in order to avoid contamination at the time of biopsy by remnants of sperm or remnants of the cells from around the oocyte, which can occur when conventional IVF is used.

From the start in 1980 we have invested in clinical, translational and fundamental research. Now, this research is carried out by more than 250 individuals from Brussels IVF, the centre for reproductive medicine of the UZ Brussel and different research units at the VUB.

#48

News Flash / Authority Over Assisted Reprod...

Last post by mensfe_admin - 2022-05-07 07:39

3 May 2022 - by Dr Kirsty Horsey
The UK's Human Fertilisation and Embryology Authority (HFEA) has been tasked by the Government to advise on what changes should be made to the Human Fertilisation and Embryology Act. The Progress Educational Trust (PET) event 'Authority Over Assisted Reproduction: What Powers Should the HFEA Have?' heard from an expert panel on the issues. PET's director, Sarah Norcross, said in her introduction that this is a 'once-in-a-generation opportunity to revise the legislation'. This means that care should be taken to get this right, and to future-proof regulation as much as possible.

The chair of the HFEA told the PET annual conference in December that it would make more sense for all aspects of regulation of fertility treatment to be in one place (see BioNews 1125). In her view, the HFEA's power is poorly calibrated – especially regarding sanctions it can impose. Flexibility and a 'graduated ladder of enforcement' are preferred. This more recent PET event asked how far others agree with this.

The first speaker was Rachel Cutting, HFEA director of compliance and information. She pointed out that the HFEA does not make law but must work within it. She explained that regulation was passed initially to cement public confidence in reproductive medicine. She highlighted that much has changed in the 30 years since – fertility treatment is now more mainstream and there are far fewer taboos. However, the sector itself has changed in the last 30 years too. More treatment is now provided in the private sector and often by large clinical groups. New and innovative forms of treatment continue to be developed – including those known as 'add-ons', which can be contentious. The creation of life in a laboratory remains unique and the fundamental need for a specialist regulator hasn't changed, said Cutting. There is still a need to inspect, license and provide information to the public, but the way this happens could be improved.

It is not a question of the HFEA having greater or different powers, she said – what matters is relevant power. She added that any new law must be less prescriptive and restrictive, and more agile, than the present law. She outlined her wish for future-proof legislation that put patient protection at the fore. The HFEA plans a ladder of regulatory tools to enable proportionate sanctions, the ability to look at experimental treatments and encourage innovation, simplification of consent and confidentiality requirements, and greater patient focus by assessing the quality of care provided. She outlined that the HFEA will consult in the summer and report to the Government by the end of the year – and it will then be for the Government to decide on next steps. But she sounded two notes of caution. First, though legislative change is the aim, the process could take years rather than months. Second – and more importantly – such change carries risk: Parliament could end up making things more restrictive.

The next speaker was Dr Mohamed Taranissi, founder and medical director of the Assisted Reproduction and Gynaecology Centre in London. He asked whether the HFEA having greater powers, including the ability to impose economic sanctions such as fines, was necessary. In his view, if the HFEA wants to extend its remit to consider the clinical performance of centres then we must look at reviewing its constitution. As stipulated by legislation, the majority of the authority proper (as distinct from the HFEA's executive) are lay members. Furthermore, the chair and deputy may not be medical practitioners and may not have worked in the sector. He said that if the HFEA wants to extend its remit to look at emerging technologies and treatments, then it must have members with the right expertise and the lay majority should be reconsidered, especially if they will have powers to impose sanctions.

Dr Taranissi also pointed out that the proposal for more power and financial sanctions is not new, but was previously made by the HFEA in 2004-5 when the Government announced the last major review of the legislation. The Science and Technology Committee at the time agreed that the regulator needed a wider range of sanctions but was concerned that the focus was on penalties and not on improving standards and systems. The Government did not accept financial powers for the HFEA then, as it was satisfied that the Human Fertilisation and Embryology Act's criminal provisions and measures attached to licensing were enough.

The third speaker was Marta Jansà-Pérez, director of embryology at British Pregnancy Advisory Service and leader of its fertility services. She was speaking from the perspective of a recently opened, inspected and licensed centre and agreed that while the legislation needs review, it remains important as it ensures clinics provide high standards of care and gives people working in the sector reassurance. She said that a review of the legislation should also mean a review of the HFEA's powers, and all should be focused on optimising patient care.

Considering specific aspects of the legislation that should be reviewed, she asked whether we should retain the current welfare of the child (WoC) assessment, saying it is beyond the remit of those treating women. Later she clarified that a strong multidisciplinary approach might be welcomed, rather than pro-forma questions, especially when a child is not yet there. Also, she argued, the law should support the growing diversity of the patient population and family forms being created – including revisiting the meaning of 'mother', 'father' and even 'partner' (for example, when there is a polyamorous relationship), as well as ensuring different genders are properly treated. Additionally, the rules on confidentiality and data sharing are currently strict, even between other healthcare providers. More openness might lead to better patient care and even facilitate WoC, she argued.

Dr Debra Bloor, director of governance at CARE Fertility and previously chief inspector at the HFEA, spoke next. She agreed with others that oversight and governance should be and often is a force for good and pointed to the reduction in multiple births (see BioNews 1132) as an example of this. She argued that the benefits of regulation are achieved most effectively when delivered by experts, remembering a time when it was proposed that the HFEA's powers could be transferred to the Care Quality Commission (CQC), but it was recognised belatedly that the CQC simply didn't have the right expertise. In her view the HFEA should continue to do what it does best, but she was less sure of its capacity in relation to innovations or clinical practice. In relation to new technology, as an example, we already have the Medicines and Healthcare Products Regulatory Agency. To transfer those kinds of responsibilities to the HFEA would be time-consuming, expensive and not straightforward, and the same applies to the Competition and Markets Authority (CMA), Advertising Standards Authority (ASA), etc – who are already in place and increasingly effective at what they do.

On the question of sanctions, she said that she believed in 2005 and still now that the sector is hugely compliant. She argued that HFEA has a brilliant track record of achieving its aims through engagement and collaboration, and worried this could be lost if that HFEA had a more punitive function, which may make the relationship between regulator and regulated more combative. However, she would like the legislation to give the HFEA more power to be flexible in interpreting the law – able to take account of changes in society, family structures, issues to do with screening and confidentiality, and in relation to consent (especially regarding parenthood), arguing that the complex catalogue of existing consents can lead to mistakes.

The final speaker was Katy Lindemann, former fertility patient and now advocate and commentator on infertility and childlessness. She began by outlining the change of emphasis of the legislation over time: whereas its initial focus was protecting the public against misuse of reproductive technology, that has somewhat shifted to considering how patients can best be protected against exploitation by commercial interests.

She argued that we should consider whether the HFEA's current powers are being used effectively. As an example she discussed what informed consent means in the context of the legislation and the impact of Supreme Court case Montgomery [2015], which clearly outlined the modern legal test for informed consent, and asked how this has been translated into the HFEA's Code of Practice (CoP). An HFEA presentation last year after a CMA review was undertaken showed that only three percent of clinic websites comply with the CoP. From a patient perspective, Lindemann argued, saying that the CMA and ASA already cover this is fine, but they only investigate non-compliance if a complaint is made. 'Compliant clinics' are not always complying, as illustrated by the HFEA's recent patient survey results (see BioNews 1141), where fewer than 50 percent of respondents felt they received enough information about costs of add-on(s), evidence for their effectiveness, or potential associated risks. In addition, despite what the law and the CoP say, the patient survey showed some of the lowest ratings for support provided by clinics (including counselling).

The Q&A with the audience at the end of the event brought some of these issues to the fore again, including the composition/constitution of the HFEA, how satellite centres can be monitored and inspected (and results made available to patients), what to do with the WoC assessment, and support for donor-conceived people (especially regarding access to information). Much of the discussion came back to the difference between what is mandated in the law, and what is only guidance.

All of the speaker the presentations, and the Q&A, showed just how important it will be for all stakeholders to engage with any HFEA consultations (and more broadly) on these issues. The voices of the sector, patients and wider society need to be heard, in order that any future law is appropriate and best suited to protect patients, families, scientific advancement and innovation.

#49

Research / Endometriosis-related infertil...

Last post by mensfe_admin - 2022-04-12 08:56

11 April 2022 - by Zaina Mahmoud
Endometriosis is seen as a 'modern mystery' in gynaecology, with its causes not yet fully understood. Prevalent in up to ten percent of people of reproductive age, it is one of the most common gynaecological pathologies. Studies suggest up to 50 percent of infertile people have endometriosis, and 30-50 percent of those with endometriosis are infertile. Despite this association between endometriosis and infertility, a causal relationship has yet to be established. While March was endometriosis awareness month, medical professionals should always be engaged in increasing awareness and education on the various options available for fertility preservation and planning, rather than concentrating efforts to a single month each year.

Those diagnosed with endometriosis are exceptionally worried about the impact on their fertility, as well as the impact of endometriosis treatment on their fertility. Oocyte cryopreservation (more often known as egg freezing) is the procedure of choice for individuals with endometriosis, promoting reproductive autonomy by increasing fertility options, including when to pursue pregnancy. Recognising the impact of age on egg quality, younger people wanting to preserve their potential future fertility may wish to seek egg freezing. Additionally, egg freezing is a good option for them because it does not impact future ovarian reserves. Therefore, fertility preservation should be integrated as an essential component in ovarian endometriosis management.

While the National Institute for Health and Care Excellence (NICE) guidelines outline surgical management for endometriosis should include pre-operative ovarian reserve testing, they do not recommend egg freezing for endometriosis. Importantly, these guidelines have not been updated since they were first published in 2017. Egg freezing has come a long way over the last decade: technological advances have resulted in excellent survival rates and clinical outcomes are similar to those with fresh eggs. Recognising the need to ensure guidelines are kept updated, Endometriosis UK has launched a campaign to rectify these gaps, and evaluate current best practice and evidence. This is especially timely, given that the European Society of Human Reproduction (ESHRE) released comprehensive guidelines, including over 100 recommendations on diagnosis, treatments for pain and infertility, and other aspects of management.

Increasingly, it has become clear that there is a need for timely diagnosis and management of endometriosis. Recently published research reveals these as key to increasing the likelihood of success during IVF treatment. Dr Katrina Moss and her team found that an endometriosis diagnosis prior to starting IVF resulted in fewer cycles and a shorter time frame needed to report a birth. Conversely, undiagnosed endometriosis prior to starting IVF was more likely to result in the use of intrauterine insemination (IUI), with more IVF cycles and more time needed to report a live birth. These findings conflict with the most recent ESHRE guidance, which recommends IUI, unless there is male factor infertility, as well as with the 2017 NICE guidelines which argue against the use of IUI in mild endometriosis.

Endometriosis is not listed as a research priority by the UK National Institute for Health Research or any other major funder. This may contribute to the fact that, to date, there are no published data on the clinical outcomes of fertility preservation in individuals with endometriosis. Despite this, fertility specialists must change the way we manage endometriosis patients, especially since there are well-documented significant delays in receiving a diagnosis of endometriosis. In addition to diagnosis delays, there are 63 endometriosis centres across the UK, with huge variance in patient capacity. Where people with a suspected or documented diagnosis of endometriosis present, their concerns must be taken into management decisions, with reproductive counselling an integral part of management and care. If fertility preservation is a key concern, then egg freezing should not be delayed, ideally undertaken, prior to surgery to maximise the number of eggs obtained, and later IVF success rates. It is known that endometriosis patients who underwent cystectomies prior to egg freezing had lower success rates.

However, the decision to offer fertility preservation options falls onto Clinical Commissioning Groups (CCGs). There are 63 endometriosis centres across the UK, with huge variance in patient capacity. In essence, similar to the infamous IVF postcode lottery (see BioNews 1120) individuals with endometriosis face significant differences in access to fertility treatment. The All-Party Parliamentary Groups on endometriosis noted that fertility preservation support is severely lacking in many areas, with some CCGs drawing boundaries between ovarian removal due to endometriosis and cancer, funding treatment for the latter but not the former. As a result, most people wanting to undertake fertility preservation must do so privately.

In line with a reproductive justice lens, egg freezing must be practically accessible, rather than merely theoretically. Currently, the adopted approach results in stratified and stratifying reproductive healthcare. This is remedied through recognition of egg freezing for endometriosis as a valid treatment plan, thereby enhancing reproductive autonomy. Medical professionals have a duty to inform themselves on the possibilities of fertility preservation as a therapeutic approach, through enhanced and up-to-date training in the diagnosis, investigation and management of endometriosis that takes into account patients' concerns. Those diagnosed with endometriosis already have to deal with chronic pain and other debilitating symptoms, as well as a medical system that has long neglected their concerns. Hopefully, Endometriosis UK's campaign will ensure that everyone is able to access necessary healthcare, without needing to travel and pay.

#50

General Discussion / Endometriosis-related infertil...

Last post by mensfe_admin - 2022-04-12 08:55

11 April 2022 - by Zaina Mahmoud
Endometriosis is seen as a 'modern mystery' in gynaecology, with its causes not yet fully understood. Prevalent in up to ten percent of people of reproductive age, it is one of the most common gynaecological pathologies. Studies suggest up to 50 percent of infertile people have endometriosis, and 30-50 percent of those with endometriosis are infertile. Despite this association between endometriosis and infertility, a causal relationship has yet to be established. While March was endometriosis awareness month, medical professionals should always be engaged in increasing awareness and education on the various options available for fertility preservation and planning, rather than concentrating efforts to a single month each year.

Those diagnosed with endometriosis are exceptionally worried about the impact on their fertility, as well as the impact of endometriosis treatment on their fertility. Oocyte cryopreservation (more often known as egg freezing) is the procedure of choice for individuals with endometriosis, promoting reproductive autonomy by increasing fertility options, including when to pursue pregnancy. Recognising the impact of age on egg quality, younger people wanting to preserve their potential future fertility may wish to seek egg freezing. Additionally, egg freezing is a good option for them because it does not impact future ovarian reserves. Therefore, fertility preservation should be integrated as an essential component in ovarian endometriosis management.

While the National Institute for Health and Care Excellence (NICE) guidelines outline surgical management for endometriosis should include pre-operative ovarian reserve testing, they do not recommend egg freezing for endometriosis. Importantly, these guidelines have not been updated since they were first published in 2017. Egg freezing has come a long way over the last decade: technological advances have resulted in excellent survival rates and clinical outcomes are similar to those with fresh eggs. Recognising the need to ensure guidelines are kept updated, Endometriosis UK has launched a campaign to rectify these gaps, and evaluate current best practice and evidence. This is especially timely, given that the European Society of Human Reproduction (ESHRE) released comprehensive guidelines, including over 100 recommendations on diagnosis, treatments for pain and infertility, and other aspects of management.

Increasingly, it has become clear that there is a need for timely diagnosis and management of endometriosis. Recently published research reveals these as key to increasing the likelihood of success during IVF treatment. Dr Katrina Moss and her team found that an endometriosis diagnosis prior to starting IVF resulted in fewer cycles and a shorter time frame needed to report a birth. Conversely, undiagnosed endometriosis prior to starting IVF was more likely to result in the use of intrauterine insemination (IUI), with more IVF cycles and more time needed to report a live birth. These findings conflict with the most recent ESHRE guidance, which recommends IUI, unless there is male factor infertility, as well as with the 2017 NICE guidelines which argue against the use of IUI in mild endometriosis.

Endometriosis is not listed as a research priority by the UK National Institute for Health Research or any other major funder. This may contribute to the fact that, to date, there are no published data on the clinical outcomes of fertility preservation in individuals with endometriosis. Despite this, fertility specialists must change the way we manage endometriosis patients, especially since there are well-documented significant delays in receiving a diagnosis of endometriosis. In addition to diagnosis delays, there are 63 endometriosis centres across the UK, with huge variance in patient capacity. Where people with a suspected or documented diagnosis of endometriosis present, their concerns must be taken into management decisions, with reproductive counselling an integral part of management and care. If fertility preservation is a key concern, then egg freezing should not be delayed, ideally undertaken, prior to surgery to maximise the number of eggs obtained, and later IVF success rates. It is known that endometriosis patients who underwent cystectomies prior to egg freezing had lower success rates.

However, the decision to offer fertility preservation options falls onto Clinical Commissioning Groups (CCGs). There are 63 endometriosis centres across the UK, with huge variance in patient capacity. In essence, similar to the infamous IVF postcode lottery (see BioNews 1120) individuals with endometriosis face significant differences in access to fertility treatment. The All-Party Parliamentary Groups on endometriosis noted that fertility preservation support is severely lacking in many areas, with some CCGs drawing boundaries between ovarian removal due to endometriosis and cancer, funding treatment for the latter but not the former. As a result, most people wanting to undertake fertility preservation must do so privately.

In line with a reproductive justice lens, egg freezing must be practically accessible, rather than merely theoretically. Currently, the adopted approach results in stratified and stratifying reproductive healthcare. This is remedied through recognition of egg freezing for endometriosis as a valid treatment plan, thereby enhancing reproductive autonomy. Medical professionals have a duty to inform themselves on the possibilities of fertility preservation as a therapeutic approach, through enhanced and up-to-date training in the diagnosis, investigation and management of endometriosis that takes into account patients' concerns. Those diagnosed with endometriosis already have to deal with chronic pain and other debilitating symptoms, as well as a medical system that has long neglected their concerns. Hopefully, Endometriosis UK's campaign will ensure that everyone is able to access necessary healthcare, without needing to travel and pay.