More than 5,000 protesters took to the streets today in a last-ditch appeal to the Government to cut through the red tape they claim is preventing an urgent lung transplant in the UK.
Supporters of Cystic Fibrosis sufferer Billy Burke brought his home town of Killorglin, Co Kerry, to a standstill as they called on health minister Micheál Martin to intervene in his case and make donated Irish lungs available for a life-saving operation.
The 29-year-old, who is on oxygen 24 hours a day, has been refused a transplant by the Freeman Hospital in Newcastle, which is contracted to carry out all Irish lung transplants.
Despite its refusal to operate on Mr Burke because of medical reasons, a Manchester hospital has agreed to carry out the procedure.
But it cannot go ahead until the Freeman releases the donated Irish lungs.
Following a rally in Killorglin, local TD, arts minister John O’Donoghue, received a petition signed by more than 30,000 people calling on Mr Martin to take responsibility for the situation.
Mr Burke had been on the waiting list in Newcastle for over three years but was taken off 14 months ago when he became ill.
He warned he would die unless Irish lungs were made available for Irish patients.
“There is a hospital in Manchester waiting for an organ from Newcastle in order to save my life,” he said.
“Something cannot be right. Some agreement, some piece of paper, some bureaucratic red tape. It is not right. I cannot die for something as simple and stupid as that.”
His sister, Lisa Burke, said it had been “an horrendous roller coaster” for the entire family.
“Billy has worked extremely hard to get well enough to be ready to go back on the transplant list again,” she said.
“Doctors told him he was taken off the list because of an infection he had in his lungs.
“We just cannot really understand it when Irish doctors said he was suitable. We are just really angry about the doctors taking him off.”
She said her brother had undergone two weeks of painful, intensive testing at the Wythenshawe Hospital in Manchester after which doctors said he was suitable for transplant.
“We have been trying for 10 months to get a pair of lungs released from Newcastle. We cannot understand why they have not been released to Manchester,” she told BBC Radio Newcastle.
“His time is very short. He’s got a few months but you never really know. He could get an infection in the morning. At the moment he’s well. You just never know. He could get a bad ‘flu. He’s on a lot of antibiotics at the moment.
“We would like to see the Freeman Hospital in Newcastle allowing lungs to go to Manchester for Billy. After all he is an Irish patient and they got all our Irish lungs.”
In most cases, a transplant is the only option available to Cystic Fibrosis sufferers in order to prolong life. Without the operation, the average life expectancy is 31 years.
There are about 1,100 people in Ireland with the condition but, due to a lack of specialist facilities, they have to travel to England for assessments and transplants.
Under a deal signed with the Irish government in 1999, the Freeman Hospital has exclusive rights to all of Ireland’s transplantable lungs.
Carl Rainey, chairman of the Cystic Fibrosis Association of Ireland, said Irish lungs should be made available for Irish patients, irrespective of where the transplant takes place.
“We are asking health minister Micheal Martin to seek a relaxation of the current exclusive arrangement with Newcastle – which clearly is not working in the interests of all Irish patients,” he said.
“Quite simply, the current situation is not acceptable, the main losers are young Irish people with CF.
“The establishment and operation of this unit to an acceptable level is the only thing which will give them the chance of a longer and better quality of life.”
A new lung transplant unit at the Mater Hospital, Dublin, opened last month but it only has the facilities to carry out up to three transplants a year.
Department of Health officials are due to meet representatives from the Freeman Hospital in two weeks to discuss Mr Burke’s case. A spokeswoman said the minister was doing everything he could to enable Mr Burke to have the operation.
A spokeswoman for The Newcastle Upon Tyne Hospitals NHS Trust, which runs the Freeman Hospital, said: “We cannot discuss a patient’s health with the media because of confidentially.”