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Children gather with Sinn Féin's Martin Kenny

Children with rare disorder attend Dáil as Harris says drug company must act in an ethical manner

The HSE made a decision earlier this month not to add it to the reimbursement list.

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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