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CHILDREN WITH A rare condition who require a drug the HSE will not reimburse gathered in the public gallery with their families today appealing for the decision to be overturned.
The children, who suffer from Morquio – a syndrome which affects the skeletal system, require a drug called Vimizim. The drug reportedly costs €400,000 per year.
However, the HSE made a decision earlier this month not to add it to the reimbursement list.
Several deputies met with the children and their families today.
“This is a life-changing drug for children with the rare condition, Morquio syndrome. It is very sad to hear the stories of the families concerned… This is a very serious situation affecting a small number of families who are requesting a meeting with the Minister for Health.
“One child from Monaghan has been prescribed the drug, which is paid for by the HSE but can only be purchased in the North. It is not possible to get it in this State, even though it is manufactured here. It is a bizarre situation,” said Independent TD Mattie McGrath.
Sinn Féin’s Martin Kenny said he met with two children today who are being treated with Vimizim.
We all meet thousands of people in the course of our life, especially those of us here in the Oireachtas, but sometimes one meets a person who is unique and whose humanity shines through. That is the case with the two children we met this morning… It is always clear when we meet people who are special and different.
He welcomed that the Health Minister Simon Harris has agreed to meet with the families, but urged the Taoiseach to “listen for five minutes” to what the children have to say.
Drug approval
“If he does so, I am absolutely confident he will ensure the drug is approved for all children with this illness. It is totally wrong that they have been left in their current situation,” said Kenny.
One mother told Shannonside FM today that her daughter, Grace, will be left without treatment next week.
Barbara McIntyre explained that her daughter is aged nine but her body is still at the development stage of a three year old.
She said the funding for the drug runs out for her daughter early next month.
Highlighting another case, Fianna Fáil’s Eamon Scanlon said one child has been prescribed the drug, but has to purchase it in the North.
“Other children cannot avail of it. There is something badly wrong in that situation,” he said.
Harris urged all TDs to be “very truthful” with families, stating that legislation clearly sets out that the HSE is the decision making body in relation to drugs, not the minister or the Taoiseach.
“I know that this is a very important and sensitive matter. It is very important for the families and I absolutely understand why they would be rightly worried, upset and concerned on this,” said the minister.
The HSE made a decision on 7 November to not add Vimizim to its reimbursement list, he explained, and in doing so the HSE has made it very clear to the company that the company can come back to the table and produce new evidence and negotiate, he added.
In my time as the Minister for Health we have seen people come to the table to talk and negotiate, even in extraordinarily difficult cases in trying to access new drugs, and we can often find a way forward. I urge colleagues in the House to not just call on the government to act, but to also call on the drug company to sit down with the HSE and negotiate a way forward on this matter.
“I understand that a small number of children are on an access scheme for this drug. It is extraordinarily important that the drug company acts in an ethical manner,” said Harris.
He said access schemes and reimbursement should not be linked.
“There is absolutely no way this House should stand over the removal of children from an access scheme for that drug. I would be delighted to say hello and have a word with the families today, and to keep in touch with Deputies on this. I believe, however, that people need to get back around the table.
When Martin Kenny asked if the Taoiseach would also meet the children, the Taoiseach said it is not appropriate for him to arrange meetings on the floor of the House.
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I spoke to a parent who was at the concert and I believe the condition of some of the young teenagers at the concert was nothing short of disgraceful. Under age girls falling around getting sick Surely something has to be done about this. Can the gardai not have a holding area where these people can be held for their own safety until a responsible guardian collects them.
The article says the met the men in a night club after the concert as for the holding area it is a way to stop underage drinking seen it enforced at an underage disco worked perfectly
I heard it was 2 members of the jason derulo fellas entourage! Not sure how true that was though. I dont know how girls in there got so drunk. Any time i went there you were properly searched before you went in, turned away if you were pissed and could only by one drink at the bar per time so you couldn’t by loads for teenagers. It’s stupid getting that locked at a concert … ruins it for yourself and everyone around ya!
I believe they have done away with searches. Probably cutbacks so these greedy organisers can squeeze every last penny out of teenagers. Also I believe most of these kids were drunk going in so should have been stopped at the entrance if people were doing their jobs
Searches and people being stopped for being drunk all falls down to who was providing security at the event
Comments should be closed on this article.
Castrate them and put them in a cell with a lifer. Unfortunately this is Ireland so they will be out in time for the next big concert
Stan
No need for a trial?
Yes if they are guilty of course. It is true that some women falsely accuse men of sexual assault but that is most likely not the case
I will hold my powder on this
Stan, a bit early in the morning to be grabbing your lighted torch and pitchfork isn’t it? I thought mob rule only came out after dark.
I doubt very much that we have any lifers in Irish prisons.
Ok I relent. I’ll put the pitchfork down.
So Stan you were the car and saw everything ?
Do you not understand what the word “allegation” means? There’s also a principal in the justice system that people are innocent until they’re proven guilty.
Stan … I think you mean castrate them if they’re guilty
Why so many red thumbs for Stan? 29 people think it’s ok to sexual assault young girls? Castration would be too good for these two perverts. Obviously they are guilty or it wouldn’t have made the news, journalist have good sources in the police, this isn’t just hear say. I wish the girls all the strength in the world to get over this horrible act of perversion.
Ah well if it’s in the news it must be true. Cancel the court case so.
Malcom, if someone made an allegation against you and you were arrested by the police do you think that you should be castrated on the spot? Only this week a woman was jailed for making false allegations against a man who was totally innocent. no doubt you would have had him castrated as well.
Look up “due process” and perhaps that will explain the 29 red thumbs for you.
Malcolm, you’ve forgotten that the employees at “thejournal.ie” aren’t actually journalists.
they engage in journalism’s equivalent of the ‘retweet’.
Yes Stan it is most likely not the case … Still can’t castrate someone based in most likely
Personally I think anyone who is guilty of sexual assault should be put in life behind bars for life, if only it was like America here, and that they would be locked up for 23 hours of the day in their own cell. This way they are left to think of what they done for the rest of their lives and eventually they will go mad. Unfortunately we don’t have laws that hold criminals to 60+ years. I really think we should revise our law system and instead of locking people up for minor things we should lock up the seriously dangerous people up for the rest of their lives. You ruin someone’s life then your life deserves to be ruined.
have your say