Pearse Doherty
Donegal · Sinn Féin · Ireland
“I move amendment No. 1 to Seanad recommendation No. 2: To delete from the row dated "1 September 2026" down to and including the row dated "1 May 2030" and substitute the following: " 15 July 2026 €502.88 €502.88 €371.85 €371.85 €371.85 €0.00 €210.45 €172.14 €167.25 €79.17 €11.48 14 October 2026 €502.88 €502.88 €371.85 €371.85 €371.85 €0.…”
“Next week, this House will rise, the doors of Leinster House will be locked and Ministers will head off on their summer holidays. Their parting gift to ordinary Irish people across the State will be to have locked in fuel price increases that will hit them in their pockets.”
“That is not acceptable and it is why we in Sinn Féin have tabled this amendment to say that these price increases should not be going ahead and that prices should be properly monitored at the appropriate time.”
“This is tied to the latter amendment and I will speak further at length on that. Recommendation No. 1 deals with the diesel rebate scheme, which operates within a window that closes on 1 October.”
“Hope is what we rely on when we have no control. It is not a substitute for prudent economic planning. There is zero certainty here. There are no guarantees that the Strait of Hormuz will remain open or that global supply lines will not be choked tomorrow morning.”
“As if that were not good enough, the Government is not just hitting people with increases on petrol and diesel. On top of that, it is going to hit them with an increase in the cost of home heating oil, natural gas and a basic bag of coal.”
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“Obviously, the most recent energy spikes were brought on by that war but that came on the back of years of relentless price increases, a crisis the Government has failed to get under control and, indeed, a crisis it has added to. Right now the cost-of-living crisis is worse than ever. Many households and small businesses are on the brink. The price of green diesel, for example, is at unsustainably high levels. Home heating oil has hit record prices and the Government still refuses to cut it by a single cent in excise. Record numbers cannot pay their electricity bills. Some 320,000 families, one in four, cannot pay their gas bills. Yet we have a Government that plans to increase taxes on gas, home eating oil and coal in the autumn, just a couple of months away, as people face into the winter.”
“The truth is that trust has been destroyed. That is why the proposals set out in this motion should be taken seriously. Sectors like the haulage sector, the agriculture sector and the fisheries sector were all treated as disposable by this Government, and that can never, ever happen again. Those sectors are still under massive pressure. This is not solely about specific sectors, however, as we know. Just like the protests, this is about a broader issue of cost of living, a crisis that affects so many people the length and breadth of this State, a crisis that is still raging today. It was not caused just by Trump and Israel's reckless war in Iran. It was here before that.”
“There was an attitude across Government that it was nothing to do with it. It acted like responding to international prices was not a job of government. It through up its hands and blamed the markets. The primary duty of any government is to protect its people, to protect the economy and people's livelihoods but week after week, as people were crying out for help, this Government turned away. It went further than that. Fianna Fáil, Fine Gael and the Independents took an approach of talking down to people. They refused to listen to what people were telling them and what they were going through. People should never have to take to the streets to force this Government to act like we saw during the fuel protests. However, that does not just happen; it takes people feeling like they have no other option.”
“I thank Independent Ireland for bringing forward this motion on a fiscal planning framework. The motion calls for a framework that would set out an economic policy response to external shocks in terms of financial supports and taxation. There is undoubtedly a need to provide certainty and confidence and to re-establish trust by clearly setting out the measures that would be considered during future crises. The energy shock we are still living through was met with a Government response that was and still is completely inadequate. It exposed a deep lack of preparation and an unwillingness to act on the part of the Government. We saw a dangerous inertia in the face of a crisis from Fianna Fáil, Fine Gael and the Independents. Instead of action, they sat on their hands while people were literally crying out for help.”
“The Minister is aware that a number of taxation and levy measures flowed from the fact that the State rescued these banks at a time when they were literally bankrupt and bankrupted the State with their activities. The Government has already overturned some of those, for example, the salary caps within banks. There is a prohibition on bonuses or at least there is an excess charge that applies in terms of a 45% additional USC charge on any bonuses that are paid out above a certain limit. There are other restrictions as well, including the levy. Where does the Minister now stand in relation to those issues with the State divesting its shareholdings in these three banks that were bailed out?”
“I have always believed that despite some of the activities of AIB, the fact that the State was a shareholder forced it to be first movers in a lot of issues where it brought Bank of Ireland along with it. Will the Minister expand on whether he has received any guarantees from BAWAG during this sale process in relation to staffing and the branch network?”
“The Minister mentioned the policy objective to return the banks to private ownership. I mentioned earlier that the State should have retained its position as a majority shareholder in AIB. It is not unique, as I am sure the Minister knows, for countries across Europe to be the majority shareholder or a significant shareholder in significant banks. It happens right across Europe, including in France and Germany. Many western European countries have that model, so the idea of the State having a share or a majority share in a bank is not something alien in terms of other European countries and in some cases competitors. The issue in this country is that we have a very small retail banking sector.”
“This question is in relation to the sale of the State's shares in the banking sector. Will the Minister outline to the House the rationale he had for selling the shares? I acknowledge that parties are entitled to different ideological positions. Permanent TSB was never a strategic bank. I would rather have held the ownership of AIB within the State, but Permanent TSB has the potential to be a third force in banking in the State. Will the Minister outline the rationale and also the safeguards that are in place to protect jobs in branches? Will he also expand on the new ownership of the bank? How long is it involved in retail banking with branches? It is Question No. 164.”
“We are not talking about hundreds of millions, or hundreds of thousands wasted on a bike shed or the €50 million wasted on the Irish Rail IT project. We are talking about billions of euro that has gone amiss as a result of selling the shares in AIB at the wrong time and then putting the proceeds from the sale of those shares in a fund that gets absolutely no return when inflation is running at 3.7%.”
“I appreciate what the Tánaiste has put on the record, that there was a reduction from €7.7 billion to a figure over €6 billion in the period of a year. However, it does not matter if the total is €7.7 billion or €6 billion. The money is sitting there and not making any return. It is in Exchequer notes, which means that the State is paying another organ of the State the 1%. It is making no return. It is financial mismanagement, on top of the fact that the Government sold the shares at one of the worst times. These shares would have been worth twice what we got for them if the Government held them today. We would be getting hundreds of millions of euro in dividends. This is serious financial mismanagement that the Comptroller and Auditor General should be exploring.”
“Worse still is that the Government sold off the public shares at that time and just left large portions of the proceeds sitting there. It did not use the money to build the necessary infrastructure. The money is losing value. That is the issue. The Tánaiste talked about Exchequer returns, but it is circular. It is in the State and getting a very low return. There is no actual return. It is a net zero return. Does the Tánaiste accept that if we held those shares, they would be worth twice what we have now? That money should at least be getting some return as it sits in the ISIF account.”
“I have always been of the view that the State should have retained ownership of AIB. It was a mistake to sell off the shares. Fine Gael has a different ideological point of view and wanted the bank back in private ownership and is entitled to hold that opinion. However, the ideological position has come at a real financial cost. I think we can accept that now with the benefit of hindsight. The public AIB share was sold off at one of the worst times. When the Government started selling shares, they cost €2.32. They are now worth over €10. That shareholding would today be worth €16 billion before we even talk about the massive dividends that we no longer get from the bank. What we have instead is less than half of that sum.”
“It has come to light that the proceeds of selling off the State's assets in the form of the shareholding in AIB is still sitting with the ISIF and is losing value. How has this been allowed to happen under the watch of the Tánaiste and his predecessor as Minister for Finance? What action is he going to take to address it? This is a significant amount of money that is losing value at a time when the Tánaiste has been running around and telling people that they need to get a return on their own investments. We have millions of euro losing value under his watch.”
“There is a difference there in the first instance. That is a bit of a smokescreen in relation to an action. The reality is that the Minister does not want to do this. The European Commission has given him the power to do it and, of course, he should do it. Let us look at the last time we saw money collected. We know that €178 million is still sitting there. That was money that was supposed to directly support workers and families with the cost of electricity. I told the Minister earlier on. There are 320,000 families who cannot pay their electricity bill and the Minister has sat on a fund of €178 million for the past three years that is just sitting there. It is ridiculous.”
“Let us be clear. The Minister has the power to do this now. He has the power to introduce a windfall tax on energy companies. He is refusing to do so. These companies are ripping off Irish customers left, right and centre. There is a decision the Minister has to take about which side he is on. He talks about the EU energy market but it does not stack up. The Irish energy market is not as integrated as that of other member states because we are an island nation.”
“It is the same old playbook. We see the same playbook being used by the Government on the occupied territories Bill. When it does not want to do something, it reaches for the EU and uses it as an excuse. The EU has given member states the green light to act on this. The ball is in the Government's court, yet it is still finding excuses as to why it will not or cannot act. It is trying not to rewrite history. The Government opposed action at EU level during the last energy shock. Electricity companies were never hit with a windfall tax in the State. The TSC the Minister mentioned did not apply to electricity companies, but the European Commission has been crystal-clear this time that member states can act. The Minister can act. Does he accept that he is choosing not to act on a windfall tax on energy companies?”
“Will the Minister reconsider his position and introduce a windfall tax on energy companies in order to fund support for workers and families in the cost-of-living crisis? The Minister has stated he will not introduce a windfall energy tax on energy companies unless his hand is effectively forced by action at the European level. His performance during the last energy shock was abysmal. He allowed companies to enrich themselves. I urge him not to repeat the same mistakes, reconsider his position and prepare windfall tax measures in the State.”
“Instead, we get a voluntary code with no audits or enforcement. Fianna Fáil and Fine Gael and the Independents that support them are blocking my Bill. The public deserves to have full transparency. They deserve not just transparency and accountability, but also reduced premiums, as was promised by these reforms. Unfortunately, if we do not have a Government that stands up to the industry, the industry will of course deepen its pockets with profits.”
“Does the Minister of State not accept the average cost for motor insurance in this State is now €655? Does he accept that insurance companies are paying out less than half of that in claims? Does he accept that insurance companies are taking more in profits and inflated costs that they are paying out? They are all facts. Insurance companies are squeezing people dry to appease their shareholders. The Government wants to blame drivers. This Government is going along with that. The transparency code refers to risk mitigation and driver behaviour more than profit or inflated costs. I tabled proposed legislation four years ago in the House to set out how a Government could mandate insurance companies to show how they are actually passing on the benefits of these reforms to customers and not profiteering from those same reforms.”
“We need a Government that is standing up to insurance companies and ensuring that the benefits of the reforms that have been passed in this House over the past number of years are not going into the pockets of the companies but, rather, are passed on to consumers in the form of reduced premiums.”
“The cost of car insurance is going up and up. This is the fourth consecutive year of price rises and every motorist knows it. Irish people already pay almost double what the European motorist pays for car insurance. When one adds soaring fuel costs, too many people are being pushed to the brink in trying to keep a car on the road. We know from the Central Bank that the cost of car insurance is going up while costs for insurance companies are going down. The simple fact is that companies are pocketing the difference with the tacit support of Government. The answer of the Government is a voluntary code designed by the insurance industry. It is difficult to overstate how weak an approach this is. How is the public supposed to have any faith this will work when it is optional and completely toothless?”
“The Minister finally published his motor insurance transparency code, which was promised in the so-called insurance action plan. The action is completely powerless with no powers to sanction companies. Worse still, I understand it is voluntary. That was never mentioned in the original action plan. Why is the Government afraid to stand up to the insurance companies and hold them to account?”
“On top of that now, we have inflation. We have so much pressure bearing down on people. Can the Minister not understand that people's lives are really challenging now? What they are seeing is a Government that thought it would have a surplus of over €4 billion, now it is twice that amount and the Minister is still not willing to alleviate the pressures on those families right now.”
“There the Minister goes again saying the winter could be very challenging. People are telling me that it is very challenging right now. How more challenging does it need to be when you cannot pay to keep the lights on in your home? That is the pressure that people are under. The Minister is saying that we need to keep the power dry until the winter and budget 2027 and I am telling him that there are large numbers of people who are really under pressure. They are under pressure because of the budget that the Government brought forward. The Government brought forward a budget of €9.4 billion last year and the Government left workers and families worse off. That is what the ESRI says. The ESRI is very clear on what the Government has done. They are worse off this year than they were last year. That is the Government's conscious decision.”
“All the pressures of life are bearing down on them and they are looking at a Minister who has a surplus that is now twice what was projected just a couple of weeks ago but who tells them to hang in there, to tighten their belts, to hold tight and that the Government will come to them maybe in October or might have something for them in January. People need support right here, right now. The Minister needs to understand that there is serious pressure on families at this point in time and they are looking for a Government that will listen and respond to them. The way the Minister needs to respond is to bring forward measures that recognise the pressures families are under right now.”
“Many people would love to be in the Minister's shoes and have the luxury to wait this out until next year until budget 2027 but they are not in that position. We have 320,000 families across this State who cannot pay their electricity bills. One in four households cannot pay their gas bills. Tens, if not hundreds, of thousands of other families are paying those bills but are really struggling, finding it difficult to make ends meet at the end of the week, working every hour God sends them and doing everything right, yet still they find it tough because groceries, insurance and rent have gone up.”
“I ask the Tánaiste again to review the decision not to have an emergency budget. It is absolutely crucial. What was announced last October in the budget left people worse off. It is not just Sinn Féin saying this - we saw in the Economic and Social Research Institute, ESRI, analysis of the budget that families were left worse off and those on lower incomes were worse off. Added to that, inflation is running at nearly double what was projected on budget day. People cannot wait until next year until the Government brings forward the budget. They need support right now with the cost-of-living crisis.”
“I am asking the Minister to deal with the cost of disability with no more delays in terms of euro and access to crucial medication.”
“It is also measured in the delays and dithering of the Government. When I say that, I am thinking clearly of two young children, and they are two of 150, in my constituency of Donegal, namely, young Aaron Langan from Laghy and young Diarmuid O'Sullivan from the Finn Valley. I had the pleasure of spending Sunday with young Aaron. He has Duchenne muscular dystrophy, DMD. He was here last year, demanding that the Government allow him access to a drug that was approved by the European Commission. It was approved one year ago next Saturday. He was demanding early access. He was walking around when that was happening. Today, he is in a wheelchair. Without access to that drug, people such as Aaron and the 150 others will not have quality of life.”
“The Minister and his Government are failing children with disabilities. It is not just children but adults, too. That is clear. We saw it earlier this year, when people gathered outside the gates of Leinster House to protest the decisions that the Government has taken. It is not just the lack of services and supports. The fact that the Government sat around the Cabinet table and decided to leave people with disabilities €1,400 worse off is shocking. It is an indictment. This motion relates to the cost of disability and Sinn Féin's call is to start to reverse that, to immediately make €500 available to people with disabilities and to bring forward a meaningful cost-of-disability payment that would meet the needs of people with disabilities. The cost of disability is not just measured in euro and cent.”
“Ministers come in here, shrug their shoulders and expect the people to pick up the tab, but it is not on. Who will be held accountable for any of this? This is €50 million of taxpayers’ money being wasted again under the Government’s watch. What is it going to do to end the culture of waste, incompetence and contempt for taxpayers and workers who are paying the price for what we are seeing over and over again?”
“At a time ordinary workers and families are counting every euro, the Government continues to be a serial waster of public money. There is the €127,000 designer bike shed at the Kerry hospital, a bike shed that is actually letting water in - you could not make it up. Hot on the heels of that, we now discover that €50 million of taxpayers’ money has effectively been torched on a failed IT system for Irish Rail. That is €50 million gone. While the Government burns through public money, ordinary people are being stretched like never before and it expects them to pick up the tab for this incompetence. It treats public money as if it were Monopoly money. The Minister knows it is not an isolated incident. It is one scandal after the other. It is one grotesque waste of taxpayers’ money after another and the public are sick of it.”
“Electricity disconnections are rising sharply, up 64% compared to this time last year, and many working families are now falling into debt by simply trying to pay basic electricity bills. The resources are there. The fund is there but the Government has chosen not to use it in the way that it is supposed to be used. Instead of putting money back into the pockets of workers who are struggling, the Government has allowed this fund to go largely untouched while energy poverty is increasing. Why under God is the Government not using the €178 million that has been sitting there for the past three years and was specifically designed to be put back into pockets of ordinary people to help them pay their electricity bills? Does the Government not understand what is happening out there in the real world?”
“We will be writing to the Taoiseach and the Tánaiste. Next week the decks should be cleared and we should pass the occupied territories Bill. We should not be talking about progress. There should be no more delays. We need action. This has been going on for years. In terms of the cost of energy, the Minister is missing the point and is trying to dress it up in a way that supports the Government's narrative but the fundamental facts remained unchanged. While families are struggling to keep the lights on, the Government is sitting on a fund of €178 million that was specifically designed to help these very same families to pay their electricity bills. Almost 325,000 households cannot pay their electricity right here, right now.”
“Will the Government finally commit to using this fund for the purpose for which it was intended, that is, direct emergency energy credits and a cost-of-living support for struggling households?”
“Families across the State will conclude that the Government moved faster to protect the money than to protect the people the money was intended for. This is not an administrative delay. That is not what we are talking about here. This is a cold, hard political choice by Fine Gael and Fianna Fáil. I am going to ask the Minister directly, on behalf of all of the people out there who are finding it really tough to pay these sky-high bills, why, under God, does the Government not use the fund for what it was intended, namely, to help these families pay the bills? How can it possibly justify hoarding this money when workers, families and pensioners are sinking deeper and deeper into energy poverty?”
“Almost 320,000 families right across the State cannot pay their electricity bill, right here, right now, at this moment. It is the second highest level ever recorded in the history of the State, and it has gone up by 58,000 families in one year alone. In the first two months of this year, electricity disconnections went up by a shocking 64% when compared to the same period last year. That is what is happening under the Government's watch, yet the €178 million goes untouched. Ireland has some of the most expensive electricity prices in Europe. Families are rationing heat and electricity because they simply cannot afford the bills. While all this is happening, the Government continues to refuse point-blank to introduce energy credits for struggling households.”
“This money was collected under an EU emergency intervention designed to claw back excess profits from energy companies and return that money to ordinary people during the cost-of-living crisis. That was the entire purpose of the scheme. It was supposed to provide rapid emergency relief for families who were being hammered over and over again by soaring electricity costs and were falling into arrears and debt. Yet, almost three years on, €178 million remains untouched in that fund. While the Government sits on the money, families are being absolutely crushed. Workers who never previously struggled are now under unrelenting pressure and they are being stretched too far. Workers and pensioners need direct relief. Families trapped in arrears need immediate support. Households facing disconnection need help to keep the lights on.”
“Ag buaic na ghéarchéime costais fuinnimh, tá €178 milliún á choinneáil ag an Rialtas ar leataobh. Bailíodh an t-airgead seo ó chomhlachtaí fuinnimh agus bhí sé i gceist é seo a thabhairt do ghnáthdhaoine le linn na géarchéime costais maireachtála. Ba é sin an cuspóir iomlán leis an scéim seo agus bhí sé i gceist cuidiú éigeandála tapa a chur ar fáil do theaghlaigh a bhí faoi bhrú ollmhór de bharr praghsanna leictreachais a bhí ag dul i méid go géar agus do dhaoine a bhí ag titim i riaráistí agus i bhfiacha. Ach ní mar sin a tharla. At the very height of a cost-of-energy crisis, the Government is hoarding €178 million of taxpayers' money that was specifically intended to help struggling households pay their electricity bills.”
“Before I turn to energy costs, I welcome the release this morning of Irish citizens who were illegally detained on the Gaza aid flotilla. Their illegal detention and treatment by Israeli forces was disgraceful, as were the actions and rhetoric of Israeli Minister, Itamar Ben-Gvir. They were utterly unacceptable and completely sickening. If the Minister's comments this morning, that the time for words has passed and now it is time for action, are to mean anything, what we need is more than progress on the occupied territories Bill. I hope she will join our call for the decks to be cleared next week and that we pass the legislation and sanction Israel.”
“Another day, another story of shocking waste on the watch of Fine Gael and Fine Gael. A public accounts committee investigation has uncovered that the Government has overspent to the tune of €40 million on IT projects in the past two years. This is crazy stuff, again and again. A DNA information system was supposed to cost €760,000; the final cost was €2.7 million. A childcare IT project was supposed to cost €7.1 million; its final cost was over €10 million. A new Garda case management system collapsed with €500,000 already spent - money wasted, down the drain. What in God's name is happening? What is going on here? Nobody in charge, no oversight, no accountability. From bike sheds to IT projects, Fianna Fáil and Fine Gael are serial wasters of the public's money. It is easy come, easy go, and people have had their fill of it.”
“We have told the Government time and again that its policies are failing people. That is why so many are giving up. They do not believe they have a future in this country and they are losing hope because of the Government's failures. The Tánaiste talks about affordable housing that costs between €2,500 and €3000 to rent every single month. It is simply unaffordable. Does he accept that the Government's legislation has allowed a situation whereby we now have more evictions than was the case during the Famine and that Fianna Fáil and Fine Gael are presiding over that?”
“The Tánaiste can spin this whatever way he wants but it is black and white. The truth is that he is deepening the crisis because of the political choices the Government has made. The Tánaiste can shake his head all he wants. Does he know what is happening out there? His Government, his party, the Fianna Fáil Party and the Independent Members who support them have opened the floodgates. We warned them about what was going to happen. The Government is allowing landlords to drive up rent. We said they would use the legislation to evict tenants and that is what is happening now. The Government is presiding over the highest rate of evictions since the Famine. In one of the wealthiest countries in Europe, families are being driven from their homes in their thousands. That is what the Tánaiste is overseeing.”
“Supply remains nowhere near the level of demand. What exactly are people supposed to do? For many, there is nowhere to go. Everybody knows what comes next, namely more homelessness, more families in emergency accommodation, more young people forced to emigrate and leave our shores and another generation locked out of the possibility of secure and affordable homes. Today's figures expose the reality of the Government's housing policies, which is more evictions, more rent, more insecurity and more homelessness. It is not an accident. Will the Tánaiste admit that the Government's rent changes have made this crisis dramatically worse? Will the Government reverse its disastrous rent hike legislation that continues to drive renters out of their homes?”
“It made a deliberate political choice to side with institutional investors, vulture funds and landlords over ordinary Irish renters in the context of what was a charter for rent hikes and evictions. The reality that people are facing now is brutal. Rents are off the scale because of the decisions that Fianna Fáil and Fine Gael have made. Even when people can afford to rent, there is literally nothing available. Young workers are locked out of ever owning their own home. Couples have been forced back into their parents' box rooms. Families are lying awake at night, terrified about getting an eviction notice. Workers in their 40s and 50s are wondering if they will ever have security and stability in their lives. While all of this is happening, the Government continues to miss its inadequate social and affordable housing targets.”
“It was warned that weakening rent protections would drive up rents and that landlords would use these changes to force tenants out. It was also warned that renters would pay the price. Now, the evidence is in. The figures to which I refer confirm that rents are continuing to rise. Rents went up again last year. At the very height of an emergency in housing, the Government decided to let landlords charge full market rents from 1 March in respect of new tenancies. The result was predictable, and now we are going to see rent hikes of between 20% and 25%. Thousands of extra euros must be found by renters every year. That means more pressure on workers, families and people who are already at breaking point in the middle of a cost-of-living crisis. What makes people so angry is the fact that the Government knew exactly what it was doing.”
“Mmore than 7,000 eviction notices have been issued to renters, the highest number ever recorded. These are real people, real lives and real families. They are workers, renters, young couples and older renters. Their lives have been thrown into turmoil as a result of the Government's policies. I am told of one couple in Galway who are in their 60s. They have worked all of their lives and have just been served with an eviction notice. The man told us that he has a pain in the pit of his stomach because they have literally nowhere to go. It is unconscionable what is happening to families like that at this stage of their lives. This did not happen by accident. The rate of evictions has skyrocketed since the Government announced its rent hike Bill last summer. The Government opened the floodgates. It was warned about what would happen.”
“Is léiriú uafásach na figiúirí a foilsíodh inniu maidir le polasaí tithíochta an Rialtais. Sa chéad trí mhí don bhliain seo, tugadh 7,062 fógra díshealbhaithe do thionóntaí, an figiúr is airde a taifeadadh riamh. Tá sé seo suas níos mó ná 50% ar an tréimhse céanna an bhliain roimhe seo. Ní trí thimpiste atá sé seo ag tarlú. Tá na rátaí díshealbhaithe ag ardú as cuimse ó d’fhógair an Rialtas a chuid athruithe tubaisteacha ar rialachán cíosa an samhradh seo caite. D’oscail sé na geataí tuile agus dúirt muid caidé go díreach a tharlódh. An nglacann an Rialtas anois go bhfuil a chuid athruithe cíosa anois tar éis an ghéarchéim seo a dhéanamh i bhfad níos measa? Figures published today are a devastating indictment of the Government's housing policies. Eviction notices are up by over 50%.”
“He was walking when people were pleading with the Government last year and now he is in a wheelchair, not knowing, even if the drug is approved, whether he will be able to access it. This is not good enough.”
“With respect, that does not cut it for these families. These parents are looking at their children in a race against time. The case of Diarmuid is an example. His mother said that Diarmuid's brother, Nathan, has the same condition. Nathan has had access to the drug through a UK trial for more than ten years but Diarmuid is approaching the age where he is likely to lose mobility. She asked me to imagine being a mother opening the fridge every day to give her eldest boy this life-changing medicine and not giving it to her other little boy. She asked me to imagine the turmoil that causes her day after day. She said she met the Minister for Health and a promise was made to allow compassionate access that would be fast-tracked for her child. She says time is not on her side. The case of Aaron, a young boy of nine years of age, is the same.”