Young people with cancer face inequalities in fertility preservation services across the UK

Young people who survive cancer are at risk of missing out on the chance to have children in the future, due to inequalities in fertility preservation services across the UK, new research has found.

The study, published today in Archives of Disease in Childhood, found significant discrepancies in the delivery and funding of these services for child cancer patients.

Fertility preservation involves collecting sperm, mature eggs, or tissue from the testicles or ovaries to freeze and store until needed.

The researchers from around the UK, led by the University of Leeds and Leeds Teaching Hospitals NHS Trust, are calling for central NHS funding to be made available to ensure equality of access to fertility preservation for all child cancer patients across the UK.

Around 1,800 children aged 0 - 14 years are diagnosed with cancer each year in the UK and for up to a fifth of these, the disease - or its treatment - causes significant damage to their reproductive organs and threatens their future fertility. National and international guidance is that fertility preservation treatment should be available and should be offered if appropriate in these cases. But the research found serious inconsistencies in what children are offered.

The main inconsistency was that mature sperm and egg storage, for children who had gone through puberty, was generally funded by the NHS, but testicular and ovarian tissue storage, for younger children or older children too unwell to store mature eggs, was generally not funded by the NHS.

'It gave me hope'

Lauren Shute was 17 years old when she was diagnosed with lymphoma, an uncommon type of cancer, in 2013. Ahead of chemotherapy and radiotherapy, Lauren was offered fertility preservation treatment. She was too unwell to go through the two-to-three-week procedure to procure and store her mature eggs. So instead, Lauren had ovarian tissue containing her immature eggs removed and cryopreserved to protect her future fertility. This was as part of a charity-funded program. Lauren's cancer treatment was successful, and she has been in remission since 2014.

Lauren is now 25, working in financial services, and living in High Wycombe. She said: "I think at the back of my mind the fertility preservation gave me a degree of hope that the doctors didn't think this was going to kill me, but rather that I would survive this. They were talking about life after my cancer, so it gave me hope that there is going to be a time after this, that things were going to be ok.
"If I decide I want children in the future, my tissue could be put back into my body to restore my fertility. And because my tissue is being stored for so long, I don't feel any pressure to have to rush to make a decision about this, so I'm really fortunate.

"I feel so grateful for the opportunity this has given me, but also sad and often guilty that this is not available to all the children that need it. It seems unfair to me that there could be funding for this for one person but not for someone else, especially when we have the capability now to do these procedures.
"I was lucky that there was money available through a charity to preserve some of my ovarian tissue, but more stable funding for tissue preservation through the NHS would be amazing, to ensure every child gets the same opportunity I had."

Professor Adam Glaser, a pediatric oncologist from the University of Leeds and Leeds Teaching Hospitals NHS Trust and lead author of the research, said: "We are now very successful at treating childhood cancer, with over 80% of children surviving the disease. This makes it all the more important that the future life choices and potential of these children are not reduced by their cancer.

Opting for fertility preservation is not a simple choice - it requires specialist oncofertility expertise and often involves a surgical procedure at the time of the cancer diagnosis. Additional uncertainties about funding put extra strain on families at a very difficult time. Having consistent funding from a central source would at least remove one of the barriers that currently exist in some regions."

Adam Glaser, Professor, Pediatric Oncologist, University of Leeds

"Additionally, it is important that funding for the storage of eggs, sperm or tissue lasts across the reproductive lifetime of these children, rather than ending after an arbitrary period that may fall before they are ready to make choices about having a family."

Inconsistent services across the UK

The research team analyzed questionnaire responses on the issue from 18 of the 20 specialist children's cancer centers in the UK, 13 in England, and five across the devolved nations. The centers were asked about referrals for the different fertility preservation options, how these were funded, and how long the funding lasted.

All the centers had made referrals for the collection and storage of sperm and ovarian tissue, and fifteen centers had made referrals for the collection and storage of testicular tissue. However, only six across the UK had made referrals for egg collection and storage, and this ranged from three of the five centers in the devolved nations to none at all in the Midlands and East of England.

Funding sources were also very unequal. Funding for fertility services is currently determined by local clinical commissioning groups, and so varies by region.

Of the 15 centers who did know their funding sources, all said NHS funding was available for sperm storage for post-pubertal boys, and nine (60%) said it was available for mature egg storage.
All centers in the devolved nations were able to access NHS or research funding for testicular and ovarian tissue storage. But in England nine of the 10 centers said no NHS funding was available and they relied on charitable sources to fund this service.

The research also showed a wide variation in the length of time that storage for mature sperm and eggs was funded, with funding for less than five years in some cases, while in others, storage was funded indefinitely.

In addition to calling for centralized funding which must cover an appropriate storage period, the researchers also recommend that a national advisory panel be established to help clinicians decide which children should be offered the choice of preserving fertility.

The panel would be made up of experts from different disciplines, including oncologists, gynecologists, psychologists, fertility experts, and surgeons.

These recommendations would help to reduce geographical disparities, according to co-author Professor Helen Picton, a biomedical scientist and oncofertility specialist from the University of Leeds, who is also Scientific Director of Leeds Fertility at Leeds Teaching Hospitals NHS Trust.

Professor Picton said: "Luckily cancer in children is relatively uncommon, but that makes it harder for clinicians to decide if the treatment will have an impact on future fertility. As the outcomes of cancer treatment continue to improve it is becoming increasingly important that young patients have the opportunity to access fertility preservation services that will enable them to safeguard their future fertility and improve their quality of life after surviving cancer. Having an expert team available to provide advice and support will help ensure a more consistent approach is used across the country."

The research was conducted on behalf of the Children's Cancer and Leukaemia Group, the umbrella body for the specialist centers. Professor Richard Grundy, from the University of Nottingham, who chairs the Group, said: "Having survived a life-threatening illness it behoves us to maximise the quality of that survival; options for fertility preservation provide vital future hope for children and their parents. It is axiomatic that such options should be available uniformly across the UK."

Co-author of the research, Dr Sheila Lane, a pediatric oncologist from Oxford University Hospitals NHS Foundation Trust, and Clinical Director of the Future Fertility Programme Oxford, a service offering fertility preservation treatment to children in England, said: "The impact of infertility at a very young age is devastating. Daily we see the difference being offered fertility treatment makes to children and their families. At diagnosis, it offers hope and a vision of the future many cannot believe will be possible and in the long term it gives them confidence to make relationships knowing that their life choices are not defined by their cancer and infertility. Central funding and equity of access to fertility treatment for both boys and girls is essential. We need to be able to offer to our children the treatment they deserve and is available in other countries with similar health care systems."