NICE have announced the approval of Raxone for use on prescription under the NHS in England. This follows earlier approvals by the Scottish and Welsh NHS some years ago and Raxone will soon be available to anyone in the UK that might benefit from it
The LHON Society today welcomes the decision by the NICE to recommend idebenone for use by NHS England. The decision from NICE makes idebenone the first and only licensed treatment available for vision impairment in people over 12 years with LHON through the NHS England, bringing England in line with Scotland, Wales and Northern Ireland, where access is already available for patients.
This has been long awaited and our grateful thanks to all who have been involved in getting this across the line
LHON is a truly devastating condition. Its impacts extend far beyond vision loss to the overall quality of life for patients. The effects of LHON reach deeply into the lives of patients, their families, caregivers, as well as individuals who carry the LHON genes. Patients often experience loss of independence, with every day tasks often becoming exceptionally challenging or even unmanageable. As a result patients must rely on assistive technologies and support from caregivers and social services.
LHON can also severely affect mental health, overall well-being and it creates a cascade of challenges related to education, employment, stigma and social participation.
LHON can also severely affect mental health, overall well-being and it creates a cascade of challenges related to education, employment, stigma and social participation.
“LHON causes devastating visual loss and it is a life-changing diagnosis for the affected individual and their family. England is now in line with the rest of the United Kingdom with idebenone now available through the NHS. This will come as a great relief to the LHON community in this country bringing hope to those who have experienced significant visual loss from this mitochondrial genetic disorder.” Said Professor Patrick Yu-Wai-Man, PhD, FRCPath, FRCOphth, Professor of Ophthalmology and Honorary Consultant Neuro-ophthalmologist at the University of Cambridge, Moorfields Eye Hospital, and the UCL Institute of Ophthalmology, United Kingdom.
The LHON Society is delighted that idebenone has been recommended for use by NHS England. This is a critical step towards full access to idebenone for patients, that may alleviate some of the impacts of LHON. The LHON Society recommends that everyone affected by the disease should discuss this treatment with their specialist consultant in order to determine whether they might benefit from this important development.
NICE Recommends Raxone in Leber Hereditary Optic Neuropathy 2025