25
Sat, May
23 New Articles

‘We’re walking on clouds’

News

GOOD NEWS Ann Marie Walsh-Harte and her son Lewis (5) at their home in Castlebar.

HSE approves drug for Castlebar boy

Áine Ryan


IN a good news story, the HSE has approved a drug that may greatly improve the life of Castlebar boy Lewis Harte (pictured).  The seven year-old suffers from a rare muscle-wasting condition called ‘nonsense mutation Duchenne Muscular Dystrophy’ (nmDMD). His family and others have been fighting for access to the drug, Translarna, for some years now.
Muscular Dystrophy Ireland (MDI) is aware of five boys in Ireland with the condition. Two of these boys are over five years of age and thus eligible for Translarna. The disease is more common in young boys, who may start to lose muscle power at the age of six. The majority are unable to walk by the age of 12.
The drug’s approval was considered at a January meeting of the HSE and confirmed to MDI. Already available in a number of  European countries, Translarna was given the thumbs-down in 2016 on cost-effectiveness grounds by the National Centre for Pharmacoeconomics (NCPE), which conducts the health-technology assessment of pharmaceutical products for the HSE.
Speaking to TheJournal.ie after she received the news, Ann Marie Walsh-Harte said: “We’re walking on clouds, I can’t believe that it has finally happened. We’re delighted.”
She said her son was doing well and could still walk, which qualified him for the drug.
“Mind-wise he is 100 percent, but his little body is letting him down. He hasn’t failed too much though, and we’ve been able to keep him on his feet,” she said.