The HSE has not responded to requests for comment
A YOUNG Limerick boy with Cystic Fibrosis was left without a “life-saving drug” for days, after the HSE cancelled his medical card in a “technical blip”.
Last Friday, the concerned mother received a phone call from the family chemist, informing her that her son’s medical card had been cancelled. As a result, the chemist was unable to dispense a packet of Kalydeco, which costs in the region of €19,000 a month.
Her son (10) was without Kalydeco for four days and, as a result, suffered from weight loss, irritable bowel syndrome and fatigue. Before this incident, the longest he was without this drug was two days. He has been on Kalydeco for six years, she told the Leader.
After the alarming phone call, the mother – who did not wish to be named – spent hours contacting HSE officials and Minister for Health Simon Harris’ office.
She said that the local HSE office was “unable to explain” why the medical card was cancelled and she was then referred onto an office in Dublin.
She said that an official in Dublin then told her that the cancellation was due to a “technical blip” and that “they didn’t offer any apology”.
She argued she wasn’t warned, in advance, that her son’s card was going to be cancelled.
She said Minister Harris’ office later said that her son’s card was active. “I told them: ‘It is active now, because they reactivated it.’ But that was not the issue; the issue was that they had cancelled it. So my pharmacist couldn’t order the medication.”
She said they reactivated the card after she informed them that he was in receipt of the domiciliary care allowance. On Wednesday morning, after a “torturous waiting game”, she was able to receive the packet of Kalydeco. She said on Tuesday that he has been forced to stay at home from school and sports, and that she had to stay by his side at night time.
“I haven’t had a proper night’s sleep since last Friday.
“At the end of the day, he has a life-threatening illness, and needs a life-saving drug. And the reverse effects of not having this for a number of days, I don’t know, my doctor doesn’t know, because he has never been off it for this long,” she said.
Condemning the situation, Fianna Fáil Deputy Niall Collins said that he will raise the matter with Minister Harris “to ensure it never happens again” and that the HSE owes the family an apology.
The Limerick Leader has contacted the HSE for a comment.