A campaign has been launched today, calling on the Government to change legislation to automatically entitle any child with a serious illness to a full medical card.
The Our Children's Health campaign is being headed up by Kevin Shortall from Clondalkin in Dublin, whose daughter, Louise, is battling leukaemia.
Mr Shortall said that since Louise was diagnosed in 2012, the family has faced a battle with the Health Service Executive to secure a medical card.
He said the family had to complete four different applications in 19 months and only got approval in recent weeks.
Mr Shortall said he set up this campaign because he does not want other families facing the difficulties he had to.
Current legislation allows for discretionary medical cards for people who are over the income threshold.
Mr Shortall said he wants that to be changed to allow anyone with a serious medical condition to automatically receive the help.
Families involved in the campaign have set up an online petition and plan to stand outside the Dáil every day it sits, until the law is changed.
Meanwhile, Minister for Health James Reilly has said the removal of cards from children with Down Syndrome, people with motor neuron disease and people with multiple sclerosis is not a place he wants to be as a doctor or as minister.
He said the removal of discretionary medical cards from people with serious illnesses is an unintended consequence of an attempt to end a disparity where some parts of the country received up to 70% more discretionary cards than other parts.
The Cabinet health committee is working on this issue, he said.
It is not their intention to allow a situation to continue where those who are clearly vulnerable or in need, whilst having means of €400 or €500 a week, are left without the supports they need for themselves or for their children.
The Government will address this issue, he said, not in the next week or two but in the coming months.
But when asked if he could indicate what solutions the Government is looking at, he said he did not want to pre-empt the work of the Cabinet committee.
He said the committee will also address the issue of cancer patients who have to have their cards reviewed every six months.