Dáil Éireann díospóireacht -
Wednesday, 6 Dec 2017

Vol. 962 No. 7

Topical Issue Debate

Pension Provisions

Deputy Willie O'Dea

I thank the Ceann Comhairle for allowing me to raise this very important topic which affects all 10,000 active CIÉ pensioners and all potential pensioners. In 1993 there were five pension schemes in operation in CIÉ, of which three were in deficit and two in surplus. After protracted negotiations, an agreement was reached in 1994 with all CIÉ employees and the company to amalgamate all five pension scheme, thereby allowing CIÉ to remove a potential €73 million pension deficit from its books. In return, the employees were given certain assurances, the first of which was that the board of CIÉ would guarantee the solvency of the pension schemes each year. This assurance was covered by SI 323 of 2002 and SI 205 of 2010. The second commitment given was that there would be regular post-retirement increases, but no specific rate was mentioned. The company adhered to these commitments until 2009 when it failed to provide sufficient funding to ensure the solvency of the schemes in that year and the following years. This was in direct contravention of the advice tendered by the company's actuary. The board of CIE has underfunded the pension schemes ever since and the underfunding now totals about €80 million.

In 2013 flawed and legally questionable proposals to drastically reduce the benefits for the employees of both CIÉ pension schemes were submitted by CIÉ to the Pensions Board. There was no consultation with the workforce or the trade unions and the proposals were submitted as a first resort, without exploring other options. This has resulted in a pay freeze for pensioners for 11 years until 2023. CIÉ's pensions committee for the schemes has consistently refused to confirm that it adheres to all of its legal requirements. CIÉ is now in the process of submitting new proposals to further restrict and reduce pensioners' benefits, again without proper consultation and adhering to correct procedure, having refused for the first time in the history of the company to fund an independent legal opinion to enable the membership to test the legality of what was done and is now being proposed.

I ask the Minister to intervene. The representatives of pensioners and the trade unions have tried fruitlessly to engage with the board of CIÉ. They have been misled, suffered obfuscation, been put off and their questions have been avoided, etc. It was traditional that if there was a dispute of this nature or there were legal questions at issue, the company would fund an independent legal opinion for the benefit of the employees and the company, something which has been flatly refused on this occasion. The only recourse they now have, having been fobbed off by the board, is to appeal to the House and people like me and the Minister. Is the Minister aware of the issue? Does he propose to intervene or do anything about it? Would he, at a minimum, as a prelude to such action, at least meet representatives of the pensioners who feel very aggrieved because their livelihoods are being shredded?

Minister for Transport, Tourism and Sport (Deputy Shane Ross)

I thank the Deputy for raising this important issue. Matters regarding the CIÉ pension schemes are, as the Deputy will know, primarily for the CIÉ group, its employees and the trustees of the pension schemes. The employees of CIÉ group companies, that is, Bus Átha Cliath, Bus Éireann, Iarnród Éireann and CIÉ, are provided with pension benefits on retirement from one of two schemes, the regular wages scheme or the superannuation scheme.

Both are defined benefit schemes. In common with the overwhelming majority of such schemes, both schemes are facing significant challenges in maintaining solvency to ensure prudent provision is made to fund the cost of future pensions in a low interest rate environment. In 2013, both schemes submitted proposals to the Pensions Authority, as required. The schemes demonstrated a plan that would restore the schemes to the solvency level required by the Pensions Authority by the end of 2023. This is referred to as the funding plan.

The plan consists of three strands. First, there is a funding commitment from CIÉ as schemes sponsor. Second, there is a range of assumptions around future market performance and growth in pension liabilities. Third, there is an investment strategy that would hope, over time, match movements in the value of the schemes obligations with movements in the value of the scheme's liabilities. Each year the schemes' independent actuary reports to the Pensions Authority on performance against the schemes' funding plan. At the end of 2016, due mainly to the low interest rate environment, both schemes were certified as being "off-track", or they had not reached the solvency milestone that had been set in the funding plan for the end of 2016. Arising from the "off-track" certification, the trustees of each scheme are required to submit revised funding proposals to the Pensions Authority outlining the steps being taken to restore each scheme to an "on-track" status. The trustees of the schemes have the obligation to submit revised funding plans.

There is no requirement on the trustees to consult with the trade union group or the active membership before making its submission to the Pensions Authority, and perhaps there should be. CIÉ, as scheme sponsor, considers it preferable to develop proposals on an agreed basis with the membership of the scheme. Accordingly, CIÉ has continued throughout 2017 to engage with the trade union group in order to bring about a set of proposals that could form the basis of the trustees' submission to the Pensions Authority. This process, which involves detailed discussion with employee representatives, facilitated by the Workplace Relations Commission, WRC, is ongoing in an effort to develop proposals on an agreed basis to address the "off-track matter". Some progress has been made but an agreed basis for resolution has not yet been achieved. CIÉ is on record at the WRC that it will not impose any change that it proposes without the agreement of the active members of both schemes and that it will continue to contribute to both schemes in accordance with the rules of the schemes.

Deputy Willie O'Dea

The Minister has stated in his reply that negotiations are ongoing but the truth is that negotiations are going nowhere. I do not know how people in this House would react if we were faced with a proposal to freeze our pensions until 2023 and, in addition, that further restrictions would be introduced.

I will put some specific questions to the Minister and I would like specific answers. He referred to the trustees as being part of the package but is he aware that an independent analysis of the CIÉ pension schemes last year concluded the role of the trustees in the schemes is marginalised and they can be amended without the input of trustees? There is no other scheme where a similar position applies in either the public or private sector. Is the Minister also aware that for the first time in history, there is no functioning pension committee, as all the members have resigned? Is he aware the same individual, whom I will not name, holds the dual role as head of group public relations with responsibility for pensions and the CIÉ board's lead negotiator; in other words, there is a clear conflict of responsibility?

Will the Minister order an independent investigation into what is happening there? Will he direct the board to answer a number of legitimate questions put to him on behalf of the 10,000 active members of the CIÉ pension schemes? Will he request the board to for heaven's sake resort to the usual practice in CIÉ and fund an independent legal opinion for the benefit of the people who are trying to represent these pensioners?

Deputy Shane Ross

I thank the Deputy for raising these matters. I am happy to refer them to the CIÉ board for their comment. I am not prepared at this stage to give a commitment to fund what he asks for just because the Deputy has raised it in the House today. If there is a conflict of interest, as maintained by the Deputy, I will refer it to the CIÉ board for comment along with the other matters. It would be foolish of me to answer that immediately either in the positive or negative as it is a serious allegation. I should look at it in a serious way but I will not make any judgment on it before I ask the CIÉ board about it.

Transport Infrastructure Provision

Deputy Pat Buckley

I welcome the opportunity to speak to this matter. The R630 is a regional road linking Whitegate with the N25, a national primary road at Midleton, and Lakeview roundabout in east Cork, which serves the Cork to Rosslare Europort via Waterford city. This regional road from Whitegate also carries traffic from adjoining areas such as Upper Aghada, Lower Aghada, Rostellan, Saleen, Ballycotton, Clyne and Ballinacurra, just to mention a few locations.

Whitegate village can boast to be the home of the only oil refinery in Ireland but the most startling fact is that it accounts for over 40% of Cork's road tonnage, and it travels on the R630 all year around. There is also Aghada power station, which is Ireland's largest, and this means the regional route is extremely busy. The Minister can understand why. Unfortunately, all this traffic must enter the N25 at Lakeview roundabout at Midleton, which is constantly choked with long tailbacks every morning. Midleton town council had approached what was then the National Roads Authority, now Transport Infrastructure Ireland, TII, a number of years ago about having an extra slip lane at the junction between the R630 Whitegate route and the N25 to alleviate this very problem. Unfortunately, over the years nothing has happened.

The commuters who use this route day in and day out have grown very frustrated with the lack of progress. More worrying is the question of safety in the area, particularly with regard to emergency services and the ambulance service in Midleton. I received information from the Minister for Health, Deputy Harris, recently indicating that the new ambulance base is to be in Ballinacurra, which is on the R630 road. From seeing all these tailbacks, I know that if the problem remains, we should fear for people's safety.

As well as all the people who use the route, I would like to know if TII will make use of the land adjacent to the Lakeview roundabout and put in an extra lane leading to Cork from the Whitegate road, thus alleviating this very serious congestion problem. I spoke to the Minister very briefly about this a while ago. It is basically a T-junction with the national route - the N25 - and the R630, which comes to a pinch point at the roundabout. There is enough land on the left to install a slip or feeder lane but there has never been support from TII. There is a large population in the area that travels the road and I mentioned some of the towns and villages. Very large trucks also use the road, and as I mentioned, fuel being taken from Whitegate accounts for some of the 40% of tonnage travelling in Cork. There is also counter-flow with the population working and living in the area. If the Minister could see the road on any morning, he would see tailbacks from Lakeview roundabout to Ballinacurra, which is the bones of a mile away. We cannot alleviate the problem unless a slip road is installed.

Deputy Shane Ross

I thank the Deputy for raising this matter, in which I know he has a great and persistent interest. It has registered on my radar because he has spoken to me about it both privately and publicly. I am grateful to him for doing so.

As Minister for Transport, Tourism and Sport I have responsibility for overall policy and funding for the national roads programme. The planning, design and implementation of individual national road projects is a matter for Transport Infrastructure Ireland, TII, in conjunction with local authorities concerned. Ireland has just under 100,000 km of road in its network and the maintenance and improvement of national, regional and local roads places a substantial financial burden on local authorities and on the Exchequer. As a result of the national financial position, there were very large reductions in the Exchequer funding available for roads expenditure after the financial crisis. For this reason the focus has had to be on maintenance and renewal rather than new improvement projects in recent years and I envisage that this emphasis on maintaining assets together with safety measures will continue into the next capital plan period. Within its capital budget, the assessment and prioritisation of individual national projects is a matter for TII, in accordance with section 19 of the Roads Act.

I understand from Transport Infrastructure Ireland that Cork County Council recently completed a pavement improvement scheme at Ballyvergan, on the N25 close to Youghal, which involved the overlay of the existing pavement. In addition, the council is completing the N25 Killeagh pavement scheme which involves pavement improvements and associated works through Killeagh village. The N25 Castlemartyr pavement scheme which has been put out to tender will involve pavement improvements and associated works on the N25 through the east side of Castlemartyr village and beyond. It is anticipated that the project will go to construction in 2018. I understand, in addition, that the council is starting design works on a number of pavement improvement schemes on the N72, primarily between Mallow and Fermoy.

Cork County Council, as the statutory roads authority, is responsible for regional and local road maintenance and improvement in the county. Funding is provided from the council's own resources, supplemented by grants. In 2017 the Department allocated €36 million to the council. We have been emphasising to all councils the importance of prioritising expenditure on roads when allocating their own resources, including local property tax receipts. Apart from a requirement that a minimum of 15% of maintenance and renewal grants be expended on regional roads, local authorities decide on allocations for regional and local roads in their areas. As such, allocations to individual municipal districts within a county are a matter for the council. Grant allocations for 2018 will be announced early next year and, in line with overall allocations in the capital plan, there will be a significant increase in funding.

Deputy Pat Buckley

I thank the Minister for his response which shows he is well acquainted with the background to this issue. I congratulate Cork County Council and East Cork Municipal District on the additional works completed in Killeagh and Castlemartyr and the planned improvements between Fermoy and Mallow. The Minister referred to national routes. That is the crux of the issue. As I said, Cork County Council has tried very hard to secure funding for its plans. I accept that moneys are limited and that the Minister has no direct remit when it comes to regional roads. However, some 40% of the traffic passing through County Cork travels this road and thereby encounters the largest chicane of a bottleneck one could ever expect to see. That tonnage is mostly coming from the Whitegate oil refinery, but there is also commuter traffic from the ESB power station, Trabolgan holiday centre and all of the towns and villages that feed into the route. Given these circumstances, will the Minister ensure this project which would alleviate a great deal of hardship for commuters in the area is prioritised? It is on the N25 national route, which is part of the difficulty. Being a regional route, it is the responsibility of Cork County Council and East Cork Municipal District which do not have the funding required to implement the proposal, but it is attached to the national route which is within the remit of TII. If the Minister cannot give me an answer today, I will be happy to follow up with him later. This might seem like a minor issue, but it affects thousands of commuters day in and day out.

Deputy Shane Ross

I understand the urgency of this matter and the Deputy's frustration at the lack of progress in addressing it. As he knows, nearly all of the moneys available to us for the immediate future are going on repair works and steady-state investment. It will be 2019 or beyond before moneys will be used for new projects which, although equally important, simply cannot be funded at this time.

On the slip road issue, I understand TII received no formal submission from Cork County Council. TII's position on funding for the proposal was advised to the council during the course of discussions between officials of TII and the council. TII's view is that the proposal to construct a slip road feeder lane is a development-led matter and, accordingly, funding for any such project should be provided by way of an appropriate development contribution rather than from the limited Exchequer funding available to TII for the national road network. I accept the urgency of the matter, but the Deputy must accept that there is very little funding available and, given that constraint, the priority must be safety above the easing of congestion. Traffic congestion is a very serious problem, but I am pressing TII to focus on safety in view of the extraordinary and unacceptably high number of road deaths. I will be perfectly happy to discuss the matter with the Deputy in private and to raise it with TII.

Rail Network Expansion

Deputy Alan Farrell

I thank the Ceann Comhairle for allowing me to raise this matter. The Minister is very much aware of the particular requirements of commuters on the north side of Dublin. For several years there have been serious capacity problems along the northern commuter line which extends as far as the Border and they continue to get worse. Although additional capacity is urgently required, I understand Iarnród Éireann is not in a position to extend existing services beyond what it already has done.

As part of the capital plan announced in 2015, I was pleased to see included an undertaking to extend the DART beyond its current finishing point at Malahide to Balbriggan, with a view to eventually electrifying the entire north-eastern commuter line. It is vital that the necessary funding and resources be put into delivering on that commitment. This afternoon, however, I have received a letter from Mr. Hugh Creegan, deputy chief executive officer of the National Transport Authority, which acknowledges that not much work has been done on electrification, particularly on the northern commuter line. This is very disappointing, particularly as I was informed heretofore that the project would proceed to planning before the end of the year. It is beyond me why my previous overtures on this matter, pointing out that the project was not being given much attention, as Mr. Creegan now acknowledges, were ignored.

The other major transport infrastructure to be delivered in my constituency is the metro north project. It was due to proceed to planning, or at least public consultation, in the fourth quarter of 2017. We are now in December and there is no public consultation process. I read a newspaper article yesterday which made reference to a public space on St. Stephen's Green, but no additional information was provided on what the transport authorities were doing to ensure timely delivery of these essential projects. If the DART project is delayed by 12 months or, more likely, two years, we are looking at 2021 before the four-year plan, construct and build process, as outlined in the national capital plan, will commence. As a daily user of the DART, I often travel on trains after 9 a.m. that are absolutely jammed leaving Malahide and do not get into the city until 10 a.m. That is incredibly frustrating, particularly for commuters further down the line. I appeal to the Minister to allocate the necessary resources to deliver these projects. The capital plan is being reviewed and additional funding provided for it. I cannot think of a better use for that additional funding than for the purpose of accelerating the delivery of the DART extension project.

Deputy Shane Ross

I thank the Deputy for raising this issue. He cannot think of a better project to put funding into, but the problem is that there are many competing projects and, in each case, its advocates think there is no better plan.

They are all urgent and not every one of them can be fulfilled immediately. The Deputy's points were well made, however, and there is a crying need for a lot of the transport to which he referred. In the meantime, we will have to continue with the programme we have outlined and we have agreed to give increased capital to projects in the north and south of Dublin as part of the new capital plan.

The Government's budgetary framework for capital investment, as set out in Building on Recovery: Infrastructure and Capital Investment 2016-2021, was reviewed earlier this year in the context of the mid-term review of capital priorities, delivery and funding. Following this work, budget 2018 increased the multi-annual capital investment funding envelopes for the coming four-year period, including providing an enhanced capital envelope of €2.7 billion for public transport investment between 2018 and 2021, including funding of about €230 million for mainline rail and DART capacity enhancement. This will enable acceleration of the initial stages of the overall DART expansion programme, focusing particularly at this stage on providing additional fleet to enhance capacity and on extending the electrified DART system. Specifically, it will allow substantial progress on electrification of the northern rail line as far as Balbriggan and the Maynooth line.

The NTA’s transport strategy for the greater Dublin area, GDA, 2016-35 proposes implementation of the DART expansion programme. The original cost of the overall DART expansion programme, including the DART underground tunnel element, was estimated at €4 billion of which €3 billion was in respect of the tunnel as originally designed. The Government decided in September 2015 that the original proposal for the tunnel should be redesigned to provide a lower-cost solution. I understand the NTA's work on this is expected to be completed soon. Notwithstanding funding constraints over the past few years, a major upgrading of the city centre re-signalling programme was progressed and is well advanced to completion. Furthermore, limited design work has been carried out on electrification of the northern line to Balbriggan. Following the additional funding announced as a result of the capital plan review, it is intended to reactivate the design and planning work for this project during 2018. At this stage it is not possible to be prescriptive on the construction commencement date as this can only be finalised following the completion of initial design work. However, it is likely to be 2021 before building work starts, subject to receipt of necessary statutory planning approval. Planning consent is likely to be sought during 2020.

The overall DART expansion programme has been assessed by the NTA as a positive project from an economic perspective and its advice is that the programme is essential for efficient transport in the GDA region and nationally. The programme is an important key to delivering an efficient transport system. When fully implemented, the enhancements to the heavy rail system provided for in the NTA's transport strategy will create a full metropolitan area DART network for Dublin, with all lines connected. This integrated rail network will provide the core high-capacity transit system for the region and deliver a substantial increase in peak-hour capacity on all lines from Drogheda, Maynooth, Hazelhatch and Greystones.

I am advised that the NTA, in conjunction with Irish Rail, continues to examine short, medium and long-term options for increased demand and the associated requirement for rolling stock investment. The expanded rail network on the northern line will be supported by a core regional bus network incorporating routes from Balbriggan and Skerries. The BusConnects programme, recently announced by the NTA, is a transformative investment package that will finance new and expanded bus routes and greatly improve bus access through and around the capital and I secured funding of over €750 million in the budget to progress the programme. My top priority over the next few years is to increase investment in public transport rapidly while also increasing public transport services for the greater Dublin area and around the country.

Deputy Alan Farrell

It is obvious that very little priority has been given to this project. It was announced in 2015 and there was a four-year delivery plan but the Minister's response suggests it will be at least two years late in being delivered and I am very disappointed by that. I commend the Minister and the Minister for Finance for the additional resources that have been allocated to the transport projects identified in the capital plan but I am disappointed about this one because it is crucial for the northern commuter line. It provides those living in the northern towns in County Dublin with additional options to get them out of their cars and keep them out. A recent transport assessment identified that Dublin city will require an additional 40 multi-storey car park facilities in a relatively short period in the absence of the delivery of key transport infrastructure, in particular on the north side of Dublin, in the form of DART services and the electrification of the northern and Maynooth lines. It is imperative that the NTA and TII deliver on what has been promised in the national capital plan for transport services across the State.

I commend the additional funding but I sincerely hope we will have no further slippage on this particular project. There is chronic overcrowding on an awful lot of services on the northern commuter lines, such that mainline diesel trains arrive in Malahide already full and this is the first stop that overlaps the DART. It is well and good for people around the first couple of stations to get into the city at peak times but for everybody else it is a chronic problem and the knock-on effect is significant.

Deputy Shane Ross

I share the Deputy's impatience but I do not have the kind of cheque book I would need to sort out this problem immediately. I ask him to accept that we have made serious commitments, not just in respect of the DART underground but in respect of Metro north, of which the Deputy will be aware, and the Luas which was an expensive project that will be opened this Saturday. The additional resources are committed and I do not think there will be any further slippage. Next year may be a little bit slow but the BusConnects project and others will - not immediately but in time - relieve the problems to which the Deputy refers. He must not doubt that the Government is committed to this capital plan. The face of transport in Dublin in the next decade will be transformed in a way of which we can all be proud, particularly on the north side.

Medicinal Products Availability

Deputy John Brassil

I will cut straight to the chase. This is the second time I have raised this as a topical issue. The last time was in March and the battle has continued. In September the drug Respreeza was made available by its company for six months but the administration and distribution were not agreed. There were 21 patients but there are now only 19 as two have tragically passed away. I say this with a heavy heart but I feel the Oireachtas, the HSE and the Minister have failed this patient cohort. There has been intensive lobbying and I acknowledge that the Minister took calls and had meetings with me on this matter. On Saturday night the HSE agreed to fund the administration of the drug for the next six months but it stated that it had agreed to a six-month transition in the interests of patient safety to allow patients to transition to alternative care arrangements. If there were alternative care arrangements for these patients they would have been on them a long time ago.

This drug has been life-changing for the 21 patients to whom I referred. It defies all logic for people to continue to make the argument that it does not work. Two patients have passed away in five weeks without this drug and another patient is seriously ill in hospital as we speak. I hope his recovery will be promoted by the reintroduction of the drug. A fourth patient in Kerry is showing serious signs of deterioration of health and a fifth, who had not received an antibiotic for three years, is now back on antibiotics. I cannot be convinced that this drug does not work - it does work.

If the Minister does not want to fund it, he should state that he does not want to because he does not have the money. I ask him to stop making the argument that the drug does not work. It most certainly does.

Deputy Alan Kelly

The Minister is aware of my views on this issue. I have spoken with him and raised it numerous different ways with the HSE and with his office. I spoke about orphan drugs at a committee. Last Friday was, for personal reasons, probably one of the angriest days of my life in politics. I was quite upset. A neighbour of mine, Marion Kelly, passed away. She was one of the two people who Deputy Brassil spoke about. Marion had been in my office numerous times. I knew her. She was an absolute lady. My point is that she was not given the best chance. We are not necessarily saying that if they were on this drug continuously, Marion or possibly the other lady up in Donegal would not have passed away, but that the body politic and the health system are letting these people down. These two people have been let down.

Marion is a neighbour of mine, originally from Puckaun, who lived in Nenagh. She was an absolute lady, loved by her locality. The people of the locality feel that she did not get the best chance to continue, leaving her daughter, her grandchildren and her family behind. She died quite suddenly. No one can tell me that it is fair for somebody to be on Respreeza for 11 years and then, through the politics of health - it is political, whatever side one is on, whether the Department of Health, the HSE or the drug company - for the hope that these 21 people have been given, with 60 more people in total affected by alpha-1 antitrypsin deficiency, to then be taken away. Suddenly, after Marion passed away, the HSE issued a statement at the weekend that it will administer the drug for a period of time. There is no alternative. Marion used to be in hospital seven or eight times a year. That went down to once or twice a year. The health benefits are obvious. We are talking about €84,000 a year. She put up a petition on Facebook, fighting for her life, asking people to support her. I supported her as much as I could.

The ultimate issue here is that the health system and health politics let her down. Her legacy needs to mean something. I know that from her family. We need to intervene for all other alpha-1 antitrypsin deficiency patients and those others coming down the line. These costs are not exorbitant. I do not want a situation where this will continue. We cannot say that there is causation and that these two ladies passed away because of the five or six weeks they were off the drugs. The facts are that they were able to survive for 11 years using this drug and that both passed away in a very short window of time. Please bear that in mind.

Minister for Health (Deputy Simon Harris)

I thank Deputies Brassil and Kelly for raising this issue, not just on the floor of the Dáil but on many occasions over the last number of weeks and months and for keeping in close contact with me directly on the matter. Like both Deputies, I express my deepest sympathies to the families of the patients who have recently passed away and offer my condolences and, I am sure, all our condolences at this difficult time. I cannot begin to imagine what those families must be going through.

As the House will be aware, a number of patients had been on a Respreeza access scheme operated by the manufacturer for a number of years until that company decided abruptly earlier this year to end the scheme for all patients on 30 September 2017. This access scheme was not one which had been established with the HSE's involvement. It had been directly established by the company. Nonetheless, I asked the HSE to satisfy itself that arrangements were put in place for the continued appropriate care of the patients concerned. I asked the HSE for the appropriate care because I am not a clinician and it is the responsibility of the health service to ensure there is appropriate care, and the HSE then engaged with the company over a number of weeks. I understand that the company agreed to continue to supply the medication free of charge for the patients who had been on the access scheme for a further period of six months, or until a further clinical trial commences next year. However, the company was not willing to continue to cover the cost of administering the medicine to these patients. The HSE, having considered all the circumstances, has decided to facilitate a transition arrangement under which it will fund the provision of the necessary nursing service to ensure that the treatment of patients can resume. I have often been critical of the HSE but I will say on the record of this House that I have seen the HSE work extraordinarily hard to try to come up with innovative solutions. It has sought meetings with the company to engage with it over a sustained period. The Health Service Executive did Trojan work to try to put in place an arrangement to get this drug flowing to patients again. I deeply regret the circumstances that happened in the intervening period.

The new transition arrangements will facilitate the immediate resumption of the administration of the drug to the affected patients and will continue until a further clinical trial commences in 2018. The company anticipates that approximately half of the current compassionate access group of patients will be recruited into the next clinical trial in 2018. The terms under which the HSE has agreed to fund the administration of the drug include a requirement that the lead clinician concerned ensures that appropriate alternative treatment regimes are put in place in good time for those patients not proceeding to the next trial. The HSE has agreed to fund the nursing service to administer the drug during the next six months because the company firmly refused to fund further administration of the drug in the period to mid-2018 when the next trial is due to begin. However, factually and legally, that decision does not in any way alter the position regarding the HSE's formal decision not to reimburse Respreeza.

I assure Deputy Brassil that the Health (Pricing and Supply of Medical Goods) Act 2013 gives the HSE the power to decide whether or not to fund a drug and its drugs group comprises ten clinicians. This is looked at from a wide range of areas. The HSE has previously considered the pricing and reimbursement of Respreeza through its decision-making process. I would say to the company and the HSE that they should not squander these six months and should continue to engage further. It is open to the company to produce more evidence, more information and to negotiate further. That is what should happen. We should not have a company that has total ownership of the access scheme with no HSE involvement ending the scheme in an abrupt manner, leaving Irish patients high and dry. I do not want to engage in the blame game against the company or the HSE, since the matter is too important, but the company has obligations as well as the HSE. I am pleased that arrangements have been made to resume treatment for patients which will allow a safe period of time but my appeal today is not to waste that time and to ensure there is further engagement with the company and HSE, and I will work with colleagues on this.

Deputy John Brassil

I agree the six month period cannot be wasted but there is a potential for another trial and for half the patients to be facilitated. That means that half will not be facilitated. Can the Minister imagine the mindset of the ten or so patients who may not get on to a trial, having seen what happened to their two colleagues, Anna and Marion, in the last few weeks, and the sort of effect that has on their well-being? The company has not performed with glory here, nor has the HSE, nor have any of us but the fact is that it is our job to look after the citizens of this country. In whatever objective analysis one looks at, patients were on a drug, being maintained, having a quality of life and two people passed away within five weeks of the drug not being administered, with another hospitalised, another extremely unwell and another back on antibiotics. That sort of evidence speaks for itself. I want to get away from who is right and who is wrong. Whether we like it or not, the HSE has, in the interests of patient safety and well-being, agreed to administer this drug. It is in the system now and it is up to us to solve it so we do not come back here in six months with the same pleadings, the same Topical Issue matter and the same health issues that these patients could run into. We should have a solution in that six month period. I plead with the Minister to set himself a deadline for the HSE and company to have this resolved before the six month period has elapsed.

Deputy Alan Kelly

I accept everything the Minister said but, to be honest with him, the families and those involved do not and cannot accept it. It is nothing personal, but they cannot. They do not care about this inter-wrangling or the politics involved. I agree with the Minister about the drug company's behaviour. I assume the HSE is doing its best. I accept all of that. However, these people do not care. These 21 people know one another. Two of them have passed away during this little window of time. It is quite obvious that others are affected. I knew this lady and I know her family. They want this to stop. They want her passing to be in some way a spark that will ensure the rest of the people are kept on the drug, that it is administered and that the process by which this drug can be approved happens. I know the process, which we have gone through in committee, the NCPE, the HSE's decision-making process, the toing and froing and all of that, but we all also know that other drugs have been approved.

This is a modest amount of money for a small group of people who deserve better. They do not care about whether it is the drug company, the HSE, the Department or anyone in this Chamber who achieves it because all they want is a solution so that they can plan their lives in some form of quality way. Please help them do it.

Deputy Simon Harris

I agree with both Deputies that the patients deserve better. I do not think anyone could disagree. It is important to note, first, that everyone is back on the drug in the sense that the drug is being supplied. I reiterate my absolute sympathy to the families of the two people who have passed away. This trial was and is a clinical trial by the company and while it is this drug today it will be another drug next week. It is this group of patients today but it will be another group of patients next week. There are rule books and there are ethical ways for a company to engage. For a company to set up a clinical trial completely independent of the health service in any country and then abruptly end it, saying that is it for those patients, is not the way to treat patients who help develop its drug and product which ultimately makes it a profit. That is not just my view. There is also the Helsinki declaration. There has to be rules of engagement in terms of how a company behaves ethically in this country. I appreciate that both Deputies agree with that. I also appreciate that it does not help the patient sitting at home today, wondering if he or she will be on the drug in six months' time.

As far as I can tell, it is unprecedented for the HSE to take this step and fund the nurse administration. They are doing so, recognising the seriousness of the situation. I reiterate that there is now a period of time available and that I would like the drug company and the HSE to engage to try to find a way forward that will provide certainty and clarity for that patient group. I will undertake to continue to liaise with Deputies Kelly and Brassil. I ask that as much focus, effort and responsibility is placed on the drug company as is on the HSE because it takes two parties to result in a successful negotiation.