The Guardian: US drug firm offers cure for blindness – at $425,000 an eye. With comment from RP Fighting Blindness

4 January 2018

Spark Therapeutics says ‘responsible price’ for Luxturna gene therapy ensures access for patients with retinal defect.

A drug whose inventors claim it can cure a rare form of blindness is to be one of the most expensive medicines ever sold at $850,000 (£630,000).

Luxturna is injected directly into the eye to address the root cause of visual impairment by replacing a defective gene in the retina. It is the first gene therapy to be approved for use in the US, and was given the go-ahead by the Federal Drug Administration last month. However, the price of the treatment has only just been revealed.

Full article on the Guardian Website

Tina Houlihan, Chief Executive of RP Fighting Blindness commented:

“The news of Luxturna being approved by the FDA for treatment was of massive excitement in the inherited progressive sight loss community – a true milestone in what so many organisations are working together to achieve. Drug treatment pricing is a complex and controversial topic – as an organisation which funds scientific research, we do understand the costs associated with undertaking quality research, and the investments required. As a patient organisation however, our first priority is always our community – we’re keen to understand how the pricing model of Luxturna will impact British patients and the role of the NHS in this. As gene therapy research progresses, we’re certain we’ll see more treatments like Luxturna, for sight loss and a whole range of genetic conditions. We’re at an exciting early stage and finally seeing the fruits of many years of foundation work undertaken by both charitable medical research funders and the commercial sector. We should not forget what a huge step forward this treatment is for our community – it’s impossible to put a value on sight.”

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