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Around this time last year, the HSE, the Department of Health and representatives from patient groups came together to give a briefing on rare diseases at the Mansion House. Among the bodies involved was the Genetic and Rare Disorders Organisation (GRDO), which helps represent some 300,000 people with rare diseases.
Then on 3 July, the National Plan for Rare Diseases was launched, a much-anticipated and very welcome document. However, almost simultaneously, the Department of the Environment, Community and Local Government declined to renew public funding to GRDO. Following a public backlash on the issue, ‘bridging funding’ to it and dozens of other organisations was provided.
In the end, GRDO was supplied with €16,580.
When dealing with the health service, millions and indeed hundreds of millions are the common currency, so to see penny-pinching of this nature makes one take note.
Other organisations initially refused funding include the Multiple Sclerosis Society of Ireland (€49,738), and the Irish Stammering Association (€24,868). The Motor Neuron Disease Association — you may remember the Ice Bucket Challenge gave many politicians a chance to show what good craic they were — was given €24,868.
Following the Central Remedial Clinic scandal, it is only right that the State pays close attention to where its money goes but in these cases, the expression being ‘penny wise and pound foolish’ springs to mind.
Well done, Dr Reilly
Dr James Reilly started his term as Minister for Health with a standing ovation at the IMO AGM in 2011. Then in the weeks before he was moved to the Department of Children and Youth Affairs, his picture was cheerfully booed at last year’s AGM. Not without reason, it must be said.
For the man who got into politics to fix health, the departure from Hawkins House must have been a difficult one.
However, in his battle over the plain packaging of tobacco products, Dr Reilly might be doing more good than he ever achieved as Minister for Health.
His conviction and passion in this area is undeniable. By progressing Ireland’s role as a world leader in anti-tobacco legislation and taking on the wealthy industry behind one of the leading causes of mortality, Dr Reilly is doing, as they say, the State some service.