More than half of England’s Integrated Care Boards (ICBs) have fertility preservation and storage policies that fall short of, or do not clearly reflect, NICE guidance, according to new analysis by stem cell charity Anthony Nolan.
Each year, thousands of people across England receive cell therapies, including stem cell transplants or CAR-T therapy, to treat serious and potentially life-threatening conditions.
While these treatments can be lifesaving, harsh conditioning treatments like chemotherapy, which are often used as part of treatment, can have lasting consequences for fertility, including damage to reproductive function, changes in hormone levels and, in some cases, permanent infertility.
For patients facing a serious illness and potentially lifesaving treatment, there is already a great deal to navigate without the added worry of how treatment could affect their future fertility. Access to fertility preservation can help patients protect their future options and should be an important part of their wider care, supporting their long-term quality of life beyond treatment.
Yet access to NHS-funded fertility preservation and storage is not consistent across England. ICBs, which are responsible for commissioning NHS services in their areas, have different policies governing access to these services.
NICE guidance recommends needs-based storage for all patients whose fertility is impacted by medical treatment. This means eggs, sperm or embryos are stored for as long as a person needs them, based on their individual circumstances and continued risk of infertility, rather than for a fixed time limit. Yet Anthony Nolan analysis has found that only 44% (16/36) of ICBs have policies that mostly reflect the NICE guidance. The remaining 56% (20/36) have policies that fall short of the guidance, are insufficient or are unclear.
The differences are evident even within London, where all four ICBs have different policies for fertility preservation and storage for cell therapy patients. This means patients receiving treatment in different parts of the capital, potentially just a short tube ride apart, may have very different access to fertility preservation and storage.
Anthony Nolan is calling on all ICBs to urgently review their fertility preservation and storage policies against current NICE guidance and address gaps in provision, to ensure patients have fair and consistent access to fertility care, wherever they live.
Richard’s story highlights the difference this access can make. He was unexpectedly diagnosed with chronic myeloid leukaemia in August 2019, aged 35, just two months before his first son was born. After his disease progressed to acute leukaemia in July 2020, he underwent chemotherapy, radiotherapy and a stem cell transplant.
Thanks in part to NHS funding for sperm storage prior to his treatment, Richard, from London, and his partner were able to fulfil their wish to grow their family, welcoming their second child earlier this year. He said:
Before starting treatment, fertility was brought up in a discussion around side effects. I was referred for an appointment with the hospital fertility centre, and my clinical team were happy to wait for my treatment to start until my sperm had been collected and stored. This storage was funded by my ICB which meant we didn’t have to pay to protect the chance of growing our family.
My fertility was tested again after treatment which confirmed that we wouldn’t be able to conceive naturally. This was incredibly tough but meant that storing my sperm was more important than ever to increase the chances of us having another baby, which we were ultimately able to do with Jonah's arrival 4 months ago.
Yasmin Sheikh, head of policy and public affairs at Anthony Nolan, said:
People receiving potentially lifesaving cell therapies are already going through one of the most difficult times of their lives. They should not have the added worry of whether they’ll be able to access fertility preservation and storage depending on where they live in England.
For many patients, the possibility of having children in the future is an important part of life beyond treatment. Yet our analysis highlights significant inconsistencies in access to fertility preservation and storage across the country.
We’re calling on all ICBs to review their policies against current NICE guidance to address regional inequalities so that every patient has a fair opportunity to protect their future fertility, regardless of where they receive care.