PET was born out of a campaign – the Progress Campaign for Research into Human Reproduction – and more than 30 years later, we remain actively involved a number of campaigns.
We campaign on your behalf. Whether it's improving access to NHS-funded fertility treatment or reforming surrogacy laws, PET ensures that the voices of patients and professionals are heard.
You can help with our campaign work in three ways.
The UK's current law on surrogacy was passed in 1985, in the aftermath of the Baby Cotton case, when little was known about how surrogacy would work in practice. Now, surrogacy is an accepted way to have a family, and intended parents and surrogates would like the law to change to serve the best interests of the child.
PET has been critical of UK surrogacy law for years, but there has been little political appetite for change. In recent years, we have worked with many organisations to establish an evidence base for reform.
During this time, we have been involved with the All-Party Parliamentary Group on Surrogacy and with Surrogacy UK's Working Group on Surrogacy Law Reform. We have also met with the Minister for Public Health, and with members of both Houses of Parliament, to build support for change.
As a result, the Government has:
- Issued guidance, for the first time, for couples considering surrogacy in England and Wales, and included in this guidance the statement: 'The Government supports surrogacy as part of the range of assisted conception options.'
- Supported the Law Commissions of England and Wales and of Scotland in making surrogacy law reform one of their projects.
We will continue to campaign on this issue until a new law is passed.
Everyone is aware that the NHS is under financial pressure, but it is less widely appreciated that fertility services are routinely among the first services to be cut. Reporting in BioNews whenever cuts were made to NHS-funded IVF, we became aware of the drastic scale of cutbacks and the resulting IVF 'postcode lottery'.
We have raised the issue with four different Health Ministers and with other MPs to marshal support within parliament. Alongside this, we have maintained a high profile for this issue through a local and national media campaign, featuring our Director Sarah Norcross as a spokesperson.
We have had some success in preventing and delaying cuts by working with Fertility Fairness – an umbrella group of professional bodies and patient support groups – to maximise the impact of this campaign.
To establish the true extent of the postcode lottery, in 2018 PET sent out freedom of information requests to all Clinical Commissioning Groups (CCGs) in England, and analysed the results. Our Director stepped down as Co-Chair of Fertility Fairness in 2019 when two of its objectives had been met, enabling CCGs to make better use of their budgets:
PET has been actively involved in many successful campaigns over the years, three of which are highlighted below.
PET successfully campaigned to extend the limit for which women could freeze their eggs from ten years to up to 55 years.
Egg quality diminishes with increasing age, a woman who wishes to delay having a child can choose to freeze her eggs for a maximum of so as to improve her chances of having a biological child later in life. This has been called 'elective fertility preservation,' 'social egg freezing' or ‘freezing for non-medical reasons’. If a woman wishes to try to preserve her fertility, the best time for her to freeze her eggs is in her 20s.
It was the situation that women who froze their eggs for non-medical reasons could only store them for 10 years whereas women who froze them for non-medical reasons could store them for up to 55 years.
So if a woman froze her eggs when she was 28, she had to be ready to use them before she was 38. If she was not ready to use her eggs by the time she was 38, she had a limited number of options which are potentially debilitating, both emotionally and financially.
- She could see her eggs destroyed, and with them perhaps her best or only chance of becoming a biological mother.
- She could become a parent before she was ready to do so, either with a partner or as a single mother using sperm donation.
- She could try to fund the transfer of her eggs to a fertility clinic overseas, and then try to have fertility treatment abroad at a later date.
This was the quandary faced by a substantial number of women in the UK. In order to avoid this quandary, other women waited until their mid-to-late 30s – when their egg quality is declining – before freezing their eggs.
This alternative course of action could have equally adverse consequences, reducing the chances of successful fertility treatment and promoting poor clinical practice. A woman's age at the time of egg collection plays a vital role in the likelihood of a successful outcome from fertility treatment.
The law did not have any biological basis, and was discriminatory against women, and limited their reproductive choices.
PET launched the #ExtendTheLimit campaign in November 2019 with the aim of changing the law. The campaign drew an increased amount of media attention to the issue and PET also launched an online petition to bring pressure on the Government to take action.
In February 2020 the Government launched a public consultation calling for views on whether the ten-year limit should change. The then Minister for Care, Caroline Dinenage said:
'Every person should be given the best possible opportunity to start a family, which is why it is so important that our laws reflect the latest in technological advancements.'
In our response to the public consultation we devised ten key principles that the Government should apply when changing the law. Two of which were
- The distinction between storing for medical and non-medical reasons should be removed.
- One patient group should not be seen by the law as more or less deserving than another.
Our campaign was interrupted due to the Covid-19 pandemic but PET continued to press the issue at every available opportunity. For example, when all fertility clinics had to close in March 2020 because of the pandemic Matt Hancock, the Minister for Health, decided that people with embryos and eggs in storage who couldn't use them due to the cessation of services would be allowed an extra two years to do so.
We seized on this, as it was evidence that the government had accepted that there was no scientific justification for destroying eggs after 10 years. It was a small but significant victory, and a bridge to a changing in the law.
On 6 September 2021 the Government announced that it planned to extend the maximum storage limit for social egg freezing from ten years to 55 years. Health Minister, Sajid Javid, said:
'The current storage arrangements can be severely restrictive for those making the important decision about when to start a family, and this new legislation will help turn off the ticking clock in the back of people's minds.'
This announcement was a major victory for the campaign.
On 29 October 2021 – PET submitted a response to a supplementary consultation from the Department of Health and Social Care: Gamete (Egg and Sperm) and Embryo Storage Limits: Consequential Impacts.
On 4 February 2022 Baroness Ruth Deech moved an amendment to the Government’s Health and Social Care Bill to extend the storage period for eggs, sperm and embryos which was supported and amended by the Government. Baroness Deech paid tribute to the work done by PET in her speech.
On 28 April 2022 the Health and Social Care Bill received Royal Assent, meaning that PET's campaign had succeeded and the law had been changed.
This law change will help women like our amazing media volunteer Sharon.
Sharon froze her eggs aged 32 in the hope of preserving her fertility for the future. She had considered freezing her eggs in her 20s, but was put off from doing so because of the 10-year storage limit for social egg freezing.
'Extending the 10-year storage limit for social egg freezing would mean so much not just for me, but for other women too; it would mean we have been heard and can now be hopeful. It would mean we move one step closer to reproductive equality and, having frozen my eggs, it would reduce the anxiety and pressures of using them before their 10-year use-by-date, enabling a less-pressured journey to potential motherhood.
'Making the decision to freeze your eggs for social reasons is in itself a difficult, stressful, costly, emotional and overwhelming process; a change in the law on social egg freezing would mean that in future women will be able to make medically-informed decisions, without having to factor in fighting a battle with an arbitrary, unscientific law too.'
We led the campaign for a change in the law to allow the use of mitochondrial donation – 'three-person IVF'. The science is complex, but in short this enables women to avoid passing debilitating mitochondrial diseases to their children. The UK was the first country in the world to legislate for mitochondrial donation.
Not only did we hold the first public discussion of this topic – crucially, we also organised a public debate in the Houses of Parliament the night before the House of Commons voted on changing the law. Many MPs attended PET's debate, which informed their thinking on scientific and ethical aspects of this technology, and the Minister for Public Health quoted one of the event's speakers when she introduced the following day's Commons debate.
We also covered the issue in BioNews, where we continue to report on mitochondrial donation.
Professor Sir Doug Turnbull, Founding Director of the Wellcome Centre for mitochondrial Research at Newcastle University, says:
'BioNews played a crucial role in the debate about mitochondrial donation. Always providing factual information and commentaries, BioNews ensured that discussions focused on the scientific evidence and helped ensure that women who carry mitochondrial DNA mutations have more reproductive choice.'
Besides working with Professor Turnbull and his colleagues, we worked with a number of organisations on this campaign – including Wellcome, Muscular Dystrophy UK and the Lily Foundation, which is the UK's leading charity dedicated to fighting mitochondrial disease.
Liz Curtis, Founder and Chief Executive of The Lily Foundation, says:
'My name is Liz and I run a charity called The Lily Foundation. I set the charity up after I lost my daughter to a mitochondrial disease when she was just eight months old. The charity has three main aims – to fund research, to raise awareness and to support families.
We first became aware of PET in March 2012 when PET, asked us to speak at a live debate in London about mitochondrial donation. Up until this point debates around mitochondrial donation had been purely based on the science and when we spoke at the event we offered a whole new angle – the patient side. My colleague and I both spoke as parents who had lost their children to mitochondrial disease.
It became clear quite quickly just how much of a game changer it was to hear the parent/patient side of the mitochondrial donation debate. And our involvement in this debate spiralled from there.
We became part of a working committee around this debate alongside PET. We had very little – or should I say no – experience with legislation before our involvement in this, and we relied on the support of other organisations like PET.
We had no experience of Parliament, and PET understood the pressure that we were under. The profile of the mitochondrial donation debate was huge, and at the time there were only two of us working at the charity, and PET understood this. They talked us through Parliamentary processes and procedure and we just knew they were there if and when we needed their advice.
We also became the link between patients and the debate, including the media. As a small charity which had never been in a situation like this before, we found it difficult to say no to anything. We felt that we had exhausted the families that we had and that we needed to protect them, and PET was so supportive of us.
I see our relationship with PET as two small charities who worked together and achieved huge things!'
PET successfully campaigned with the Turner Syndrome Support Society to extend the period for which eggs could be stored, to increase the reproductive options for women with Turner Syndrome.
'My lovely daughter Emma* was diagnosed at birth with Turner Syndrome. This condition affects one in 2000 female babies every year and a key characteristic is infertility. IVF with egg donation is the only way for those affected to have a child themselves.
Since 2005, when the rules relating to donations were revised to remove the anonymity of egg and sperm donors, as a result of which there is a shortage of donor eggs and sperm. Indeed, in some areas, waiting lists for treatment have closed altogether. So at that point, I took the decision to become an altruistic egg donor while I could to help an infertile couple become parents. A couple now has twins as a result, which I'm always incredibly thrilled about.
While doing this for others, I took a bit of a gamble and froze some of my eggs for our daughter, because my eggs are her only opportunity to have as near as genetically possible, her own child. It was a gamble because there was a rule in place which meant my eggs would be destroyed after ten years, as they were intended for use by someone other than me). Unfortunately my daughter would still be too young even after ten years to be thinking about starting a family of her own and using my frozen eggs. But given that any parent naturally wants to help their child, I started to investigate if it were possible to alter the law to allow a longer time limit for egg storage, and to fight for that possibility to become a reality.
I appeared (anonymously) on Woman's Hour, Radio 5 Live's The Victoria Derbyshire Show, ITV's This Morning and in many newspapers both local and national. Our MP, Andrew Stunell, also took the case forward for us and I enjoyed support from many other organisations and individuals, including the PET.
There followed a roller coaster of events and emotion. The good news was that after this considerable amount of hard work and dedication, the ten -ear regulation was revised and the period was extended a change which came into force on 1st October 2009. The bad news was that the House of Lords proposed to overturn this virtually straight away, and a debate was scheduled for later that month.
It was at this incredibly stressful time that PET's involvement played a really crucial role in helping me keep Emma's options open for the future. PET worked with me and the Turner Syndrome Support Society (TSSSS) to write up my personal case and a statement to circulate to members of the House of Lords, ensuring our views on the proposed annulments were brought to their attention during the debate.
I stayed up and watched that debate on tv, and thankfully the proposed annulments were rejected. To say we were delighted that our daughter now had hope and choice doesn't come close to describing how we felt. Not only would our daughter benefit, but so would any other child with premature infertility caused by any condition.
Through PET's direct influence, the TSSS raised their profile amongst policymakers, and Emma still has choices if she decides to become a mother herself.'
*names have been changed.
Arlene Smyth, Executive Officer at the Turner Syndrome Support Society, adds:
'The society is very grateful to Sarah Norcross, Director of PET, for her help and support… as [to comment on the proposed regulations] was a first for the society.'