Staff at the National Centre for Medical Genetics, Crumlin, have criticised ongoing cuts to its budget, which they say are leading to excessive waiting times and the risk of genetic testing cut-off limits.
Last week Ireland hosted Diseases without Borders, an all-Ireland conference to mark Rare Disease Day on February 28th, under Ireland’s EU presidency.
However, despite Government claims at the conference of its commitment to rare diseases, the HSE has again cut the budget of the centre, which is the only Irish unit to provide genetic testing for many rare conditions and offers comprehensive services to patients and families affected by or at risk of a genetic disorder.
The waiting time for new appointments at the centre is now 18 months, due to increased demand for its services, budget cuts and a reduction in specialised staff of 15 per cent to 20 per cent in recent years, according to its director, Prof Andrew Green.
The centre, which receives its funding through Our Lady’s Hospital for Sick Children in Crumlin, where it is based, had a 5 per cent budget cut last year and a 4 per cent cut this year.
“However, as we went over budget last year we’ve been told it is actually a cumulative cut of 18 per cent, which is a cut of about €900,000 out of a €6 million budget this year,” said Dr Sally Ann Lynch, consultant clinical geneticist at the centre, and a speaker at the conference.
She said the centre spends about €1 million a year carrying out genetic testing, but it might have to stop when its budget runs out. “We’re trying to stay within our limit from last year and carry out testing where it will make a difference and be vigilant.”
The conference heard that Irish patients with rare diseases were experiencing increasing difficulties in accessing treatment under the HSE’s treatment abroad scheme.
Minister of State for Primary Care Alex White said the HSE had a limited budget but confirmed it was in the process of appointing a clinical lead for the national clinical programme for rare diseases.
The conference heard from rare disease experts across Ireland and Britain that early diagnosis and treatment in centres of excellence offered the best outcomes. However, some diseases were so rare it was not possible for smaller countries to provide specialised services and patients had to travel, hence the need for cross-border collaboration.
All European countries have until October 25th to implement the EU cross-border healthcare directive and until the end of the year to adopt national plans outlining their approach to rare diseases.