Fertility preservation: Rachael Bland’s story

Last week, BBC presenter Rachael Bland’s fight to overcome her two-year breast cancer battle sadly came to an end. She was only 40 years old. She leaves behind her husband Steve and their young son Freddie. She also leaves behind four frozen embryos, following her battle to preserve her fertility.

Rachael shared her story on her blog Big C Little Me. She wrote compellingly about cancer and fertility saying on 19 February this year “Babies are probably not the first topic that springs to mind when you think about cancer but they were one of the first things I thought about after my diagnosis.  It’s another aspect of getting cancer that’s unique to being diagnosed when you’re young – the issue of what to do if you’ve not started or finished having a family”.

Rachael’s story will strike a chord with many women. She went to great lengths to preserve her fertility, even delaying chemotherapy to undergo an IVF cycle all over Christmas. She wrote on her blog “There are so many emotions to process when you’re first diagnosed and thinking about IVF as well might seem like a bridge too far.  But my advice would be to ask about fertility preservation, as you can give yourself some insurance pre-chemo but afterwards it might be a struggle.  You see, cancer treatment plays havoc with your fertility.  Chemotherapy targets fast-dividing cells, both the good and the bad and some of the fastest dividing are of course in your ovaries.  As a result, chemotherapy can leave you infertile and going into early menopause.  especially if you’re knocking on 40 like I was”.

Rachael’s four frozen embryos offered hope of another much wanted child had she overcome her battle with cancer. However, in undergoing IVF Rachael would also have completed consent forms at her UK fertility clinic stating her wishes for the storage and use of her embryos during her lifetime and in the event of her death. Depending upon her completion of these forms and her wishes, there might still be the possibility for her husband Steve to complete their family using these embryos in fertility treatment and surrogacy. 

As a fertility lawyer I have worked with many women over the last ten years who have been diagnosed with cancer and other serious medical conditions which have impaired or taken away their fertility and ability to carry a pregnancy. I have also worked with many women who have struggled to build a family in their late 30’s, 40’s and 50’s and seen the heartache caused by their diminishing fertility rates and unsuccessful fertility treatment cycles. As women increasingly delay starting a family into their 30’s and beyond, we need to do much more to proactively manage women’s fertility and its preservation. We need better education and more debate and awareness so women can make informed decisions and avoid crisis management.

You can read my further comment about fertility law and fertility preservation arising from Rachael’s story in my article in Female First.

Posthumous conception: a ray of hope for the future

I was proud to be part of the wife’s specialist fertility law team in the groundbreaking case of Y v A Healthcare NHS Trust & The HFEA & Z (by his litigation friend, The Official Solicitor) [2018] EWCOP 18.  In a unique legal ruling, The Court  of Protection (‘COP’) sanctioned the extraction, storage and posthumous use of the husband’s sperm following an accident and catastrophic injury.

The husband and wife had wanted to conceive a child and were in the early stages of fertility treatment, when he was involved in a tragic accident that caused a devastating brain injury. It was doubtful whether the husband had given his written consent to the storage and use of his sperm in fertility treatment in the legally required form, although he had discussed and agreed with his wife that his sperm should be used by her in fertility treatment and in the event of his death.

Only a fertility clinic licensed by the HFEA could extract and store his sperm and that could only be achieved with his effective consent.  Section 4(1A) of the Human Fertilisation and Embryology Act 1990 prohibits the procurement, testing, processing or distribution of sperm without a licence.  Very sadly, the husband’s brain injury left him without capacity to provide the required consent.

The Human Fertilisation and Embryology Authority (‘HFEA’) had no legal powers to authorise the retrieval, storage and posthumous use of the husband’s sperm in treatment in the UK.  The wife was unable to rely on the assistance of the Human Tissue Authority as sperm and eggs are specifically excluded from its remit under the Human Tissue Act 2004.  Furthermore, there was no case law which covered this situation.

Wanting to honour her husband’s wishes and family building plans, the wife applied to the COP for permission for the retrieval, storage and posthumous use of his sperm.  This was a groundbreaking move because the COP had never before been involved in a posthumous conception context.  The COP’s jurisdiction usually covers assistance with property, financial matters and decisions about personal welfare for people who lack capacity to make decisions for themselves.

The COP used powers under the Mental Health Act 2005 to reach a judgment that it was in the husband’s best interests for his sperm to be retrieved, stored and used by the wife in posthumous treatment in the UK.  The COP took into account all of the facts of the case and relied on evidence that the husband and wife had discussed and agreed his sperm should be used in fertility treatment and in the event of his death, they had been referred for fertility treatment and were under the care of a fertility clinician and had booked a further clinic appointment.

The case shines a light on the importance of taking ownership of your fertility and conception plans in the short, medium and longer term.  There are no guarantees in life and no one is immune from the risk of illness, injury, accidents or changes in personal situations which can have a fundamental impact on your or a loved one’s fertility.  Moreover, the law is complex and it does not always protect people or their future family building wishes.  Specialist fertility law advice can help you make informed decisions and proactively protect and maximise your fertility and family building arrangements.

NICE issues new IVF and fertility guidance

The National Institute for Health and Clinical Excellence (NICE) has today issued new draft guidance concerning the provision of fertility treatment and IVF on the NHS.  The new proposals recommend that the age limit for women undergoing IVF treatment on the NHS should be increased from 39 to 42 years.  The proposals also recommend for the first time that same-sex couples should qualify for fertility treatment if they have undergone six cycles of artificial insemination at a private fertility clinic. Furthermore, the proposals recommend that women should be offered fertility treatment on the NHS after two rather than three years of unsuccessful trying for a baby.

NICE guidance on the provision of IVF treatment on the NHS hasn’t been updated since 2004. It is high time this is achieved to reflect better treatment success rates, equality legislation and greater demand for IVF by women aged 35 upwards.  However, NICE guidance is not mandatory and it remains to be seen whether these new proposals will bring about greater recognition of IVF as a legitimate clinical need or greater fairness in terms of access to fertility treatment on the NHS across the country.  In the meantime, fertility patients continue to battle with the reality of the postcode lottery and varying restrictions imposed by PCT’s who continue to flout the guidance.

Infertility affects one in six couples across the UK from all  walks of life.  The IVF postcode lottery causes great distress for people when faced with the reality that they will not be offered the recommended number of free IVF cycles on the NHS or worse none at all. This can lead to relationship breakdown and depression which can blight people’s lives and cause long term misery and hardship. Private fertility treatment can cost thousands of pounds which is too often beyond the reach of couples, particularly in the current economic climate.  With an increasingly ageing population, we need to do all we can to increase the birth rate in the UK to mitigate the increasing economic burden placed upon younger generations of society.

Fertility treatment is on the rise in the UK

The latest figures released by the Human Fertilisation and Embryology Authority (HFEA) show a six percent increase in the number of fertility treatments undergone in the UK  last year.

According to the HFEA’s annual report, approximately 45,200 women underwent fertility treatment in the UK in 2010, up from approximately 42,500 in 2009. The HFEA’s report also indicates that the number of fertility treatment cycles using donor eggs and donor sperm increased. The majority of women who underwent IVF treatment in the UK in 2010 were aged 37 years or under. The average age of women undergoing IVF was 35.

Fertility treatment, IVF, PGD and the creation of healthy embryos

I was delighted to attend Progress Educational Trust’s 2011 annual conference entitled “The best possible start in life: the robust and responsive embryo on Wednesday 23 November 2011.  The conference featured a series of leading lectures looking at assisted conception and the ways in which the circumstances of the embryo’s early development influence not only the likelihood of successful pregnancy and birth, but also the subsequent development and health of the child and adult in later life.

The demand for IVF continues to grow despite the relatively low success rates associated with IVF treatment.  The conference investigated the reasons for the relatively low success rates and addressed what needs to be done to improve these and create healthy embryos and babies. In addition to refining medical techniques associated with fertility treatment, discussion focused on the need for greater understanding and education about the risks associated with fertility treatment, multiple pregnancies and low birth weight babies.  There were calls for further investment and research into the longer term health of those conceived through assisted reproductive techniques and a more collective approach to family building across the world.

It was also predicted that pre-implantation genetic diagnosis (PGD) will rapidly become a significant feature of fertility treatment in future, as screening costs become more affordable and increasing numbers of medical conditions can now be identified using this technique.

American Bar Association hosts international fertility and surrogacy law congress in Las Vegas

I was delighted to be an invited guest speaker and moderator at The American Bar Association’s international assisted reproduction law congress in Las Vegas from 26-29 October 2011.  The conference brought together the world’s most pre-eminent experts in fertility and surrogacy law to discuss assisted conception, family building practices and law and policy across the world.

As increasing numbers of intended parents are crossing borders to access assisted reproductive technology and surrogacy programmes to build their families, there has never been a greater need for recognition and understanding of the legal issues and problems they  face.  The conference united  the world’s leading experts in fertility and surrogacy law and will help to give a much needed voice at a time when the Hague Conference on Private International Children Law has identified surrogacy as a “pressing socio-legal problem” and is investigating ways of regulating surrogacy internationally.

I was delighted to moderate an international panel of fertility law experts from the Ukraine, Greece and Brazil and for my own part give an international perspective of assisted reproductive technology law and practice.  My presentation addressed the scale of infertility, the reasons why intended parents cross borders for assisted reproductive treatment and popular foreign destinations, wider issues associated with cross-border assisted reproductive treatment, the risks and problems for intended parents travelling abroad for surrogacy and the nebulous question of whether there should be greater regulation of surrogacy law and practice.

It is estimated that one in seven couples experience problems conceiving. Intended parents cross borders to access fertility treatment and surrogacy programmes for a number of different reasons including cost, availability and cost of donor gametes and permissive legislation abroad. This raises a number of legal, practical and wider issues associated with management of donor information globally, whether there should be an internationally unified donor cap limiting the numbers of families to which a donor can donate, the wider emotional issues associated with assisted conception, management of health care costs, surrogacy law and practice, as well as citizenship and nationality and immigration law issues and protocols.

There is no international harmonization of surrogacy law, with some jurisdictions prohibiting it, others allowing it on a restricted non commercial footing and some embracing surrogacy on a commercial basis.  Surrogacy raises sensitive and difficult issues about the right to have a child and a family life, altruism, commercialism and freedom of choice. Assisted reproduction techniques now make it possible for children to be conceived and families to be created in ways that simply were not possible forty years ago.  Fertility treatment and surrogacy now has a global reach which has out-paced legislation and regulation. Until nations get to grips with these issues it is difficult to see how any form of progressive international consensus or regulation will be achieved in relation to assisted reproduction. The risk is that in the meantime international regulation of surrogacy will be introduced akin to adoption, which could limit the practice of surrogacy around the world.

Assisted reproduction lawyers play a vital role in educating intended parents about the legal issues and pitfalls when they cross borders for fertility treatment and surrogacy.  The American Bar Association is to be congratulated in hosting this international conference and creating a united voice of the world’s leading fertility and surrogacy law experts .  As a group we must continue to engage with law and policy makers across the world as they struggle to get to grips with the increasing demand for assisted reproduction and the implications and regulation issues this creates.

Fertility, infertility and parenting: is fertility preservation for women the way forward?

Increasing numbers of women in the UK are postponing plans to have a family. Instead, many women are prioritising a foothold on the property ladder, career progression and consolidation of their financial positions and relationships.

The average age of new mothers in the UK is now 30 years, whilst women are at their most fertile aged 20-25 years. Half of all women undergoing IVF in the UK are over 35 years and functional infertility becomes a reality for many women from around age 40.

Women can struggle to conceive later in life and their journey to parenthood can be difficult and fraught with anxiety and disappointment.  Some will also have to face the painful reality that they will never carry a successful pregnancy or have their own biological child (although surrogacy and egg donation can offer hope and can create a much wanted family when natural conception or IVF treatment using their own eggs is no longer a possibility).

As women delay having a family until later in life, this increases the numbers of only children and these offspring are themselves more likely to go on to become older mothers themselves and have only one child of their own.  This raises continued concerns about a perceived ‘generation gap’ and a shrinking UK population that has to support ever increasing numbers of retired people.

The effects of these changing social trends on women’s fertility and family building plans in the UK therefore raises important issues.  It  begs lots of questions, including should we be doing more to preserve women’s fertility and should egg freezing for women be given greater consideration in the UK?  Science and technology has moved on and there has been significant improvements in egg freezing techniques over the last three years. Spain has become particularly successful at egg freezing and thawing and in some cases can require as little as five thawed eggs to establish a pregnancy. Egg freezing avoids the creation of frozen embryos (with the ethical concerns this can raise) and can preserve a women’s ability to have a biological child of her own in future or complete her family, when her biological clock may otherwise have run out.

Women face increasingly difficult life choices in the UK, having to balance economic concerns, relationships and the constraints of their biological and fertility clock.  For growing numbers of women, having a family is perceived to be the last piece of the jigsaw and this delay may prove fatal in terms of their ability to have or complete their family naturally. Egg freezing may offer some breathing space and hope for women who may otherwise not be able to fulfill their hopes and dreams of having a family, although it raises a number of potentially sensitive issues.  Overall, there is still much to be done in the UK to raise awareness of the issues surrounding fertility (and its preservation), infertility and the importance of planning for parenthood.