UK kids with cancer face funding lottery for fertility preservation services

Credit: CC0 Public Domain

Children and young people with cancer in the UK face a sort of funding lottery for services to preserve their fertility, with specialist treatment centers relying heavily on charities to pump the money they need, especially in England, the first study of its kind finds, published online in the Archives of Disease in Childhood.

This is despite the clear international consensus that these services are provided to people at risk of losing their fertility as a result of cancer treatment, note the researchers, who advocate centralized NHS funding to ensure equitable provision.

Childhood cancer treatment has greatly improved over the past 50 years, with more than 80% of patients surviving their disease for decades. But between 1 in 5 and 1 in 10 long-term childhood cancer survivors will experience fertility problems.

Anecdotal evidence suggests wide variation in the provision and availability of NHS funding in the UK for these services, raising concerns among professional groups about unequal access.

Between July and August 2019, the study authors therefore surveyed all 20 specialist pediatric cancer treatment services in the UK about current facilities and funding arrangements for preserving fertility in cancer patients under the age of 18.

Current clinical guidelines recommend that the freezing/storage of ovarian tissue/eggs and testicular tissue/semen be offered to children and teenagers whose future fertility is likely to be affected as a result of their disease and treatment.

Each center was asked 30 questions related to referral practice over the past 12 months, funding sources, and the length of time funding was available for egg and sperm storage. Eighteen (90%) centers responded from across the UK.

Each center had referred patients for fertility maintenance in the past 12 months, representing a total of 479 individual referrals, with an estimated range of 338-620 cases.

All 18 centers had referred patients for ovarian tissue collection/storage; 17 had been referred for sperm banking (one center was excluded because of the age group of their patients); 15 (83%) had been referred for testicular tissue storage; and 6 (35%) had done so for mature egg collection (one center was excluded due to the age range of their patients).

Most regional variation was seen for storage of mature oocytes and testicular tissue. None of the centers in the Midlands and East of England had referred a patient for mature egg storage, while only 1 in 4 in the South of England, half in the North of England and 6 in 10 centers in the Devolved Nations, had done that.

Approximately 3 out of 4 centers in Northern England, 8 out of 10 in Southern England and Devolved Nations, and all centers in the Midlands and Eastern England had referred one or more patients for testicular tissue preservation.

This reported variation may simply reflect the type of clinical cases treated during the study period, note the study authors.

Those centers who were aware of their funding source said sperm freezing was funded by the NHS. But only 9 centers reported the same for the storage of mature eggs.

And half said the storage of ovarian and testicular tissue was funded by charitable sources; centers in England reported this much more often than centers in the rest of the UK.

Of all cases estimated to have been referred for some form of fertility preservation in the past 12 months, approximately 1 in 5 (20%) reportedly depended on funding from charitable sources.

The duration of funding available for each technique also varied, with respondents citing a period of less than 5 years to “undetermined.” Few respondents were sure of the exact length of time.

“To our knowledge, this is the first national assessment of fertility preservation activity for young people with cancer, including both boys and girls as well as funding sources,” the study authors write.

Based on their knowledge of childhood cancer incidence rates and the activity of specialist centres, they estimate that the reported responses from the 18 centers cover the practice for 92% of newly diagnosed cancer cases in the UK under the age of 18.

“With approximately 1800 new cancers diagnosed each year in the UK in those under 18, these results estimate that approximately 25% of patients were offered fertility maintenance. [in 2019],” they suggest.

“Urgent action is needed to ensure that NHS funding is available to all to provide these individuals with the right security and hope, while enabling the delivery of accepted and NHS-mandated standards of care,” they emphasize.

“It is essential that all young people with cancer have access to optimal and internationally recognized best practices.”

Preserving fertility in girls and young women with cancer ‘randomly’, experts say

More information:
Archives of childhood illness (2021). … dischild-2021-321873 Provided by British Medical Journal

Quote: UK children with cancer facing fertility conservation lottery (2021, September 20) retrieved on September 20, 2021 from

This document is copyrighted. Other than fair dealing for personal study or research, nothing may be reproduced without written permission. The content is provided for informational purposes only.

Comments are closed.