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Drug win for Barnsley dad after Chronicle appeal

By Lynsey Bradford, Town Reporter Tuesday 15th April 2014
Jonathan Bennett

A FATHER who is rapidly losing his vision because of a rare eye condition has been told the unlicensed drug which could treat it will be made available to him after he appeared in the Barnsley Chronicle.


Jonathan Bennett, 43, of Sparkfields, Mapplewell, is the first person since 2003 to be diagnosed in this country with the rare strain of Leber's Hereditary Optic Neuropathy and could eventually be blind.

He had been trying for six weeks to get the drug Catena (Idebenone) from pharmaceutical company Idis Pharama but said he has been 'passed from pillar to post', even though he wanted to pay for it himself.

He contacted the Chronicle and MP Dan Jarvis after becoming frustrated.

When the Chronicle contacted the company this week, a spokesman said the drug was shipped out on Wednesday.

Jonathan said: "It's really good news. It's been a quick turn around - six weeks ago I wasn't getting anywhere. Now, the drug is being shipped out.

"It's been proven to do some good in some cases and it's proven to be safe so it's not going to do any harm. I don't think I could have lived with myself if I had not given it a go."

Jonathan has an appointment at a specialist genetics centre of excellence in Newcastle in April and is hoping some trials may be conducted using the drug.

A spokesman for Idis Pharma said the company had followed procedure, though there had been some confusion about which pharmacy to send it to.
"Because it is an unlicensed drug, there is a lot of paperwork and diligence required to make sure the patient is eligible."

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