Ireland should be leading the world in terms of treatment and care of people with cystic fibrosis given that the country has the highest incidence of the disease per head of population, a leading consultant has said.
Prof Barry Plant, director of the Adult Cystic Fibrosis Centre at Cork University Hospital, said that as of 2015, Ireland had 1,219 people registered with CF with a median age of 19, making it the country with the highest incidence of the disorder per head of population.
"For all intents and purposes, cystic fibrosis is an Irish disease. We have the highest incidence worldwide. We have some of the most severe CF genotypes," said Prof Plant, who is also chairman of the medical and scientific committee at Cystic Fibrosis Ireland.
“Therefore, we have a duty and responsibility to lead from the front when it comes to CF treatment and care. Over the past 10 years we have seen great strides in treating this disease. Survival rates are increasing,” he said.
“We have designated CF centres with dedicated in-patient and out-patient facilities. We have had some really exciting therapeutic developments too with new personalised CF therapies that treat the disease rather than the symptoms.
“But now we need to look at the next stage of optimising CF care. We know from European Registry projections the number of adults with CF in Ireland will increase by 75 per cent by 2025 and the number of children by 25 per cent. These will present additional challenges that need to be addressed.”
Setting a model
Speaking in advance of Cystic Fibrosis Ireland's annual conference which opens in Killarney on Saturday, Prof Plant said that with more people with CF per head of population than anywhere else in the world, Ireland should be setting a model for other countries to follow.
“We shouldn’t be looking to others for guidance. Other countries should be looking to us as leaders in CF care. From research to new drugs to medical devices to social care supports, we have a responsibility to tackle this issue well. “
He pointed out that the HSE had recently established a National Clinical Care Programme for Cystic Fibrosis which is looking at all aspects of the treatment of patients with CF in Ireland including appropriate ratios of services and staffing to patients.
In this way, every person with CF should be able to access the same level of service no matter what part of the country they live in – a development which would send out a clear message about how Ireland treats and cares for people with CF.
“Currently every CF centre has staffing and service challenges, but with the support of Government and the HSE, the future recommendations of the National Clinical Care Programme for Cystic Fibrosis could create CF services fit for the 21st century,” he said.