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Though listed as a priority for government, the plan has yet to emerge
A new National Rare Disease Plan has no anticipated publication date, despite the previous one being outdated for the past four years.
Yesterday, Fianna Fáil TD Pádraig O’Sullivan asked Minister for State Seán Fleming, TD, what steps have been taken to progress the plan.
“Last week on the retirement of the CMO I noted in his list of accomplishments the previous rare disease plan was published,” he said, during Dáil proceedings last night. “Funnily enough, that was published in 2014 and extended until 2018. Since 2018 we’ve had no replacement to the national rare disease plan.”
O’Sullivan said that the new plan is important because there are 300,000 people in Ireland who suffer from a rare disease. He also said that globally, approximately 30% of all children under the age of five with a rare disease will die before their sixth birthday.
“We are laggards in terms of our provision for rare diseases,” he added. “It’s supposed to be a priority for government, yet two years into the government, no movement has been made.”
In 2019, the Irish Pharmaceutical Healthcare Association (IPHA) published figures which highlighted how Ireland is behind its European counterparts on the issue of orphan drugs – pharmaceutical agents that treat rare diseases, the production of which are subsidised by government.
In 2021, Vicky McGrath, CEO of Rare Diseases Ireland, told the Oireachtas Health committee that people with rare diseases were being ‘left behind’.
Fleming said that the many of the recommendations of the previous National Rare Disease plan have already been implemented, including the establishment of a national rare disease office.
“The Irish government has a great track record in supporting rare diseases through the Health Research Board,” he said, noting that the availability of exchequer resources is key to providing orphan drugs to patients suffering from a rare disease.
Last year, the government allocated its largest ever budget for treating rare diseases, €50 million.
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