For a brighter future...
Following advice from the Clinical Priorities Advisory Group (CPAG), NHS England has agreed to routinely commission mercaptamine hydrochloride viscous eyedrops (Cystadrops) for corneal cystine deposits, in people aged 2 years and over.
In other words, doctors treating patients with cystinosis in England will soon be able to prescribe the new formulation of eye drops, called Cystadrops.
Until now the only eye drops available to treat cystine deposits caused by cystinosis was an unlicensed product, that requires constant refrigeration and needs to be administered every waking hour to be effective. The new treatment is a gel-based formulation that has a recommended dose of 1 drop in each eye, 4 times a day. It needs to be kept in a fridge until opened, but can then be stored at room temperature.
From our perspective as a patient organisation we are extremely pleased that NHS England has come to this decision. We are delighted that there is now a new treatment option for the ocular symptoms of cystinosis.
We have worked hard over the last few years, to gather patient feedback on the need for new treatments and present this to CPAG. But we couldn’t do it alone, we’d like to thank everyone who has shared their thoughts with us by completing our surveys, it really helps.
We’d also like to thank Metabolic Support UK, who have supported our submissions to NHS England, as well as the clinicians that helped gather the necessary medical evidence and gave their feedback to CPAG. This was the third and final chance for CPAG to recommend the routine commissioning of Cystadrops.
If you have cystinosis, or you are a parent or carer of a child who does, and you feel this treatment may be beneficial, please discuss this with your consultant at your next appointment. As this is a new specialised treatment it will take a few weeks for the processes to be put in place to allow this to be prescribed.
More information is available on the NHS England website, at the link below.
Please don’t hesitate to get in touch with us if you have any questions. Unfortunately, this decision only benefits patients being treated in England, but we are hopeful that this will encourage NHS Scotland, NHS Wales and Health and Social Care in Northern Ireland to commission Cystadrops for their patients in the future.
