NHS England Cystadrops Decision


Unfortunately, following advice from a recent meeting of the Clinical Priorities Advisory Group (CPAG), which makes recommendations to NHS England on which services, treatments and technologies should be prioritised for investment, NHS England have decided not to routinely commission Cystadrops at this time.

CPAG assesses drugs, medical devices and treatments according to their clinical effectiveness, benefit for patients and value for money. It discusses multiple new treatments at each meeting, which it categorises into five levels of priority, with those that have the highest relative clinical benefit for patients and the lowest relative cost classified as level 1, while treatments with the lowest relative clinical benefit and highest relative cost are classified as level 5.

Cystadrops were classified as level 4. NHS England funds as many of the treatments, by order of priority, as it can from the available budget at that time, starting with those classified as level 1. In their most recent funding round there was only sufficient resources to fund treatments in levels 1, 2 and one in level 3. Essentially this means that there were treatments for other medical conditions considered to be higher priority in terms of the benefits to the patients and the cost to the NHS.

Treatments can be reconsidered at future CPAG meetings, so it is possible that Cystadrops could be approved for routine commissioning in the future if there is sufficient budget available.

Also, Cystadrops are a licensed drug. This means that NHS trusts can prescribe them if they pay for them using their own budget. However, so far most NHS trusts have not been prepared to do that, most likely because they are expensive. We are aware of only 2 patients who have been prescribed Cystadrops in the UK. Most patients are prescribed an unlicensed product, made by Guy’s and St Thomas’ NHS Foundation Trust. Cystadrops are significantly more expensive than this product, but they do not have to be administered as often and do not need to be kept refrigerated after opening.

Please keep an eye on our website and social media, there may be an opportunity in the future for patients to give their feedback on existing treatments for corneal cystine deposits and the need for improved treatments. We are hopeful that Cystadrops will be reconsidered for routine commissioning by NHS England later this year.

For more information about how the CPAG process works please watch NHS England’s video below.

As always, please don’t hesitate to contact us if you have any questions.

Comments are closed.

QUALIFY-US Study Participants are needed for the testing of a newly developed questionnaire to measure the [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Summer 2023 Newsletter The Summer 2023 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.