CLOSE to 6,000 people have signed a petition calling for urgent access to the drug Givinostat for people living with Duchenne Muscular Dystrophy (DMD), a rare and progressive condition that causes severe muscle degeneration.
The petition is calling for urgent access to Givinostat, a treatment approved in other countries and authorised by the European Medicines Agency (EMA), which can help slow disease progression, maintain mobility and improve quality of life.
However, the drug has not yet been approved for reimbursement by the HSE, meaning it remains unavailable to patients in the state.
Campaigners say it has now been a year since EMA approval, describing the delay in access as prolonged uncertainty for families affected by the condition.
Among those at the centre of the campaign is nine-year-old Aaron Langan, who has been diagnosed with the incurable condition.
Aaron, from Laghey, now relies on a wheelchair full-time as his lower body has become too weak to support mobility. His family say the proposed treatment could help slow the progression of the disease and preserve remaining strength in his upper body.
Other families affected include the Ballybofey-based O’Sullivan family, who are also calling for access to the drug.
A public rally was held in Donegal Town last weekend, where supporters urged people to sign the online Change.org petition titled Give Irish Duchenne Access to Givinostat.