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Treatment for Leber hereditary neuropathy (LHON) now available in Ireland

June 11, 2019

Treatment for Leber hereditary neuropathy (LHON) now available in Ireland content

The drug Idebenone (commercial name Raxone) has been approved for reimbursement for a subset of people living with Leber hereditary optic neuropathy (LHON). This means that the HSE will cover the cost of the drug for people with LHON who meet certain criteria, these are outlined below.

One of the main eligibility criteria is “onset of visual loss in the most recently affected eye of five years or less”. This means that if someone began to lose vision in their second eye more than five years ago, they are not eligible to receive the drug.

Idebenone is to be funded through the High Tech Drug Scheme (HTDS) which means that it is only available through a specialist prescriber. In the case of Idebenone, there is currently only one specialist prescriber, who is based in the Royal Victoria Eye and Ear Hospital Dublin. The recommended dose is two Idebenone tablets (150mg each) three times a day. Patients are to be reviewed every six months; treatment may be discontinued after 24 months if no response is observed.

Fighting Blindness made a submission to the Health Technology Assessment process for Idebenone in January 2018. A number of our members living with LHON shared their personal experience for inclusion in this submission and we sincerely thank them for their time and contribution.

If you have any questions about the information provided above, please do not hesitate to contact 01 6789 004 or advocacy@fightingblindness.ie.

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Being diagnosed with a condition causing sight loss can be very difficult. The Fighting Blindness Insight Counselling Service provides a range of supports for people affected by sight loss and their families. Click here for more information about the Insight Counselling Service or contact Insight on 01 674 6496 or insight@fightingblindness.ie.

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