Seanad Éireann debate -
Thursday, 19 Oct 2017

Vol. 253 No. 14

Commencement Matters

Community Employment Schemes Supervisors

Senator Trevor Ó Clochartaigh

Cuirim céad fáilte roimh an Aire Stáit, atá ina chuairteoir rialta ar an Teach seo, bail ó Dhia air. Tá mé ag ardú ceiste inniu a bhaineann leis na maoirseoirí ar na scéimeanna fostaíochta pobail ar fud na tíre agus lena gcuid cearta pinsin. There is, rightly, a whole debate under way about pension entitlements and changes which were brought in in 2012, but I want to draw the Minister of State's attention to another pension inequality which was brought to Government's attention long before 2012. I am told the Minister of State has been talking about this issue for quite a while, but we have not seen anything done in respect of it. I was contacted by a constituent, on behalf of her mother who is a community employment scheme supervisor and is due to retire, in respect of the Labour Court recommendation, LCR19293, dated 22 July 2008, which determined that "an agreed pension scheme should be introduced for Community Employment Scheme Supervisors and Assistant Supervisors" and that such a scheme "should be adequately funded by FÁS". Following LCR19293, supervisors around the country understood that their pension rights were secured, but this woman, who is due to retire soon, has no pension provision, unlike her public sector peers.

This matter has repeatedly been brought to the attention of the Departments of Employment Affairs and Social Protection and Public Expenditure and Reform but there has been no clarity on the future pension entitlements of these people who have served their communities and the country. We often hear Senators say how wonderful our CE schemes and the people who work in them are, so the issue really must be addressed.

As far back as 17 November 2011, Deputies Ó Caoláin and Pearse Doherty raised this issue with the then Minister for Social Protection, Deputy Burton, who said that the cost of the introduction of any scheme would likely be of the order of €3 million, with retrospective costs in the region of at least €30 million. At that stage, Deputy Burton said there was an issue because we did not have the money in the State coffers to pay for it. Given that we have now an economic recovery and are told that we have emerged from recession and in light of the fact that CE played a supporting role in this regard, is it not appropriate that the issue be reviewed because the excuse to which I refer is no longer applicable?

I am informed that the woman to whom this matter relates did not make alternative pension provision because she always believed that provision - as obtained by other parties recognised under LRC 19293 - would be made through equivalent channels.

Other Deputies also raised this issue in 2011. A point of discussion arising out of that is the basis on which the Department can reject liability for these costs - to be met from public funds - falling on it as a result of the ruling of the Labour Court. The Department assumed responsibility for CE schemes from FÁS following the controversy in respect of the spending of resources by that agency, most notably, €48 million on advertising and, to add insult to injury, a retirement package for the director general - enhanced by €1.4 million - to leave five years early. The source for that information is the Comptroller and Auditor General's report. Using the Minister's own valuations, such expenditure would have adequately funded the spine of FÁS - the CE supervisors - until 2018. Does the Government not have a responsibility to the workers who embodied the true ethos of FÁS during that period?

Our current Taoiseach was Minister for Social Protection in 2016 when this issue was raised with him in the context of a CE scheme. He referred to places relating to that scheme being amalgamated and the issues of redundancy needing to be discussed. He obviously took on board the fact that this was an issue for the Department to at least examine.

I am told that the community sector high-level forum was convened and met on a number of occasions to give consideration to the issues involved. In that context and in light of the number of occasions on which this matter has been raised, will the Minister of State clarify the position? Aside from this working group being given another name, has a chair been appointed? What has the group achieved in the past two years? What were the objectives, targets and outcomes achieved? Do minutes of the meetings of this group exist and can they be made public? What budget was designated for it and why have we not seen any movement on this issue? I know the Minister of State appreciates the CE schemes. It is a bit hypocritical of Ministers - including the line Minister - to talk about the anomaly in the pensions system that has been the subject of discussion in recent days without seeking to address the anomaly to which I refer. I hope that a resolution can be found.

Minister of State at the Department of Housing, Planning and Local Government (Deputy Damien English)

I thank Senator Ó Clochartaigh for raising this matter. I apologise that the line Minister cannot be present to deal with it.

The community sector high-level forum was reconvened in 2015 by the then Minister for Public Expenditure and Reform, Deputy Howlin, to examine certain issues pertaining to the community employment sector, having regard to the consequences for costs and precedent. This includes community and employment supervisors and assistant supervisors who have been seeking, through their union representatives, the allocation of Exchequer funding to implement a Labour Court recommendation relating to the provision of a pension scheme dating back to 2008.

In considering the particular matter referred to, regard must be had to the costs and precedent of such an arrangement were one to be created. At the most recent forum meeting in April, the Department of Public Expenditure and Reform outlined its intention to conduct a detailed scoping exercise in order to comprehensively examine and assess the full potential implications of the issues under consideration. This exercise is currently being progressed and will be completed shortly. The next meeting of the high-level forum will take place on 2 November and the results of the scoping exercise will be made available to its members on that date.

It continues to be the position that State organisations are not the employer of the particular employees concerned and that it is not possible for it to provide funding for such a scheme. The employees are, or were, employed by private companies, notwithstanding the fact that the companies concerned are, or were, reliant on State funding. In considering the matter, regard must be had to costs and the precedent of such an arrangement were one to be created in view of the fact that the individuals employed in that sector are not employed by the State, even if many of the services they provide are funded by the State and are certainly essential because we can all see the benefits of the great work they do. There is, however, a desire to discuss the matter and arrive at an outcome.

Senator Trevor Ó Clochartaigh

The Government is engaging in rank hypocrisy in this regard. There is a legal basis to say that when programmes are directed and funded by the State - and the State really controls all the elements relating to the employment of those people - it has a de facto responsibility to recognise that fact. There has been a Labour Court ruling on the matter. Is the Government really saying that it does not need to abide by such rulings? What kind of precedent does that set for all the other people who have taken cases to the Labour Court? It is disgraceful that the Government would provide that type of example. In light of what is being said about other pension issues at present, the Government really needs to look at this scenario because people are retiring. It needs to rectify the situation and tell the group that is convening to make its deliberations far more quickly and resolve these issues for those people who, while we are speaking here, have no idea where they stand as regard their pension entitlements.

Deputy Damien English

It is best to let the forum do its work. It was convened by the then Minister for Public Expenditure and Reform and will meet again in November. A process is in place.

Senator Trevor Ó Clochartaigh

How long is it going to take?

Deputy Damien English

It is only a few weeks away. It is best to let that continue and see what comes out of it. We can debate the matter further at a later date. Again, I apologise. The Minister was caught up in the Dáil and could not be here to take the debate. The Senator must understand that a process is in place and it is best to let that continue its work for now.

Schools Building Projects

Senator Kevin Humphreys

I rise to raise a serious issue relating to Shellybanks Educate Together school, which opened in 2014 as a single-stream school. At the request of the Department of Education and Skills, it expanded to a double-stream school to facilitate the demand for school places in the area. The Department of Education and Skills has purchased Roslyn Park, an old secondary school that served the Dublin 2 and Dublin 4 areas very well for many decades. My understanding is that a fee of approximately €25 million was paid to purchase the Roslyn Park site. I understand that the site is designed to accommodate both a secondary and a primary school.

I want to ask the Minister about timelines, particularly with regard to the Roslyn Park site. When will we see a design for the primary school? When will we see a timeline for planning permission? When will planning permission be applied for? Could the Minister provide me with information regarding the number and type of classrooms? Will a temporary school be placed there in the meantime? My understanding is that a 12-room school will be placed on that site temporarily. I am concerned about playing facilities and locating a primary school in the middle of a major construction site.

The Harold's Cross greyhound racing track was purchased or is in the process of being purchased by the Department for an educational campus but there has been very little clarity about this. My understanding is that approximately €25 million is being spent on the purchase of the site. Last month, Dublin City Council changed the zoning to facilitate building a secondary school there. When will the local community know whether a secondary school will be built on the site? When will we know what the catchment area is because there is huge pressure for secondary school places in the Dublin 8, Dublin 6 and Dublin 6W areas? Many parts of that overall area have no secondary schools other than those of the fee-paying variety. The local community is very anxious to see a plan brought forward for the provision of a secondary school with a proper playing field because there are no playing fields in the Harold's Cross-Terenure area. The Harold's Cross site could provide not just an educational facility but also one, in the form of a sports ground, that could be enjoyed by the community in general.

I am seeking clarity from the Minister of State on all these matters. There has been an expenditure, or a commitment to expenditure, of approximately €50 million in respect of these projects, but no clear timelines for the building works. When will we have certainty in this regard? I hope the Minister of State can offer comprehensive answers to the questions I have raised.

Deputy Damien English

I thank the Senator for raising this matter as it allows me to provide an update on the current position regarding the planned developments at Roslyn Park in Dublin 4 and at the former Harold's Cross greyhound stadium in Dublin 6. The Minister apologises for being unable to attend the debate. I will address most of the issues raised by the Senator, but if he requires any additional information, I will ask the Minister to contact him directly. Significant demographic growth in the Dublin south city centre area in recent years has led to the need for additional school accommodation in the area and the necessity of acquiring permanent sites for that purpose. Concerted efforts to acquire such sites in the area have been ongoing by the Department since 2012, in the context of expected requirements at both primary and post-primary level.

A number of site options were assessed in the south Dublin city area. When Roslyn Park came onto the market, the Department recognised the valuable opportunity to acquire a site in the area that could help to address school provision requirements. The Department successfully completed the acquisition and it is intended to provide permanent accommodation for Shellybanks Educate Together national school and Dublin South City Educate Together secondary school on the Roslyn Park site. Plans for the site's development are currently being progressed. In the first instance, it is intended that the provision of temporary accommodation on the Roslyn Park site will allow Shellybanks Educate Together national school to move from its current temporary location in the RDS to Roslyn Park in September 2018. This will be closely followed by the development of a new permanent 16-classroom primary school on the Roslyn Park site from September 2019. It is intended that this level of accommodation will then facilitate the move to Roslyn Park of the new Dublin South City Educate Together secondary school from September 2019. Planning and design work is under way to ensure the permanent accommodation for the secondary school will be provided on the Roslyn Park site as soon as possible thereafter. Arrangements are being made in Dublin 4 for interim accommodation for the Dublin South City Educate Together secondary school for its first intake of pupils for September 2018. The Department is working closely with the patron body, Educate Together, on these arrangements.

In the context of meeting demographic needs, in addition to the above, the Harold's Cross greyhound stadium site was identified as a suitable location for the provision of further school accommodation in the south Dublin city area. A feasibility study of the site concluded that the property is suitable for the provision of a significant level of additional new school accommodation. Agreement with the Irish Greyhound Board on the proposed acquisition was reached, subject to a change of zoning on the property. That change was recently effected at a meeting of Dublin City Council. The acquisition of this site by the Department is currently at an advanced stage.

With regard to the specific school provision on the Harold's Cross site, the Department is currently engaged in a review of demographics which will determine the extent of additional school provision required nationwide. Until this final review of demographics has been completed, it would be premature to announce the exact configuration of permanent school provision at the site. The intention is to have that review completed by the end of the year, although it might be subject to some minor drift. Once a new school requirement has been established from the demographic exercise, a separate process will be conducted to establish which patron will run the new school. It will be open to all patron bodies and prospective patrons to apply for patronage of a new school under the patronage process. Parental preferences for each patron, together with the extent of diversity currently available in the area, are key to the outcome of this process. I assure the Senator that the Department is working to ensure sufficient and diverse school provision in the south Dublin city area in line with its emerging requirements.

I do not have the planning permission timelines to which the Senator referred, but I will get that information for him. The design stage is being worked out in conjunction with the patron and I will get the details of that to the Senator at a later stage. I do not share his concerns regarding the provision of on-site temporary accommodation. Such arrangements have worked out well elsewhere and the Department of Education and Skills has acquired a lot of experience in managing temporary schools on sites of new schools. It is a common way of managing the process which has helped us in recent years, under the Fine Gael-Labour Party Government and the current Government, to react to development pressures and provide accommodation where needed as quickly as possible. I am not aware of any ill effects of this approach.

Senator Kevin Humphreys

I thank the Minister of State for his response and his commitment to ensuring the additional information I require will be forwarded to me as quickly as possible. My concern regarding the operation of temporary accommodation on the build site relates not only to building issues, but also to the question of how to maintain temporary access and the possible knock-on effect of such access. We need to have a full conversation around these issues to ensure any problems that arise are ironed out at an early stage.

In regard to the demographic study that was carried out of the catchment area, only Dublin 6 and Dublin 8 were included in that catchment area. In regard to the proposed secondary school on the Harold's Cross greyhound track site, there is an urgent need to incorporate Dublin 6W, including Terenure and Kimmage, into the consideration. Many of the local primary schools that will feed into the new school are in those catchment areas. It is not viable for a child in Terenure or Harold's Cross to travel to a secondary school in Sandymount, for example, on the coastal side of the constituency. There is an urgent need for clarity as parents of primary school children in the area are making decisions now as to where those children will attend at second level. The Minister of State indicated that a final review of demographics will be completed by the end of the year but we need clarity as to whether we are looking at a broader catchment area for Harold's Cross. Will all of Terenure and Kimmage and parts of Crumlin be included? That is the ultimate test for the viability of a secondary school there. Parents who have children moving into secondary school in the coming years are very anxious because there are so few places. There is a degree of panic as to whether they should be saving hard given that, as it stands, there are no secondary school choices in the area other than fee-paying ones. I would appreciate if the Minister could come back on those issues as soon as possible.

Deputy Damien English

I will make sure the Minister gets back to the Senator without delay. The purchase of this key site for educational purposes is something I would expect to be welcomed by all.

Senator Kevin Humphreys

It is very much welcomed.

Deputy Damien English

The intention is that the new facility will solve all the problems the Senator raised. I cannot comment, however, on which areas it will cover. The demographic analysis is looking at all the available options to ensure accommodation is found for all pupils who need it over the course of the coming years. Up to date data from birth certificates and child benefit records are utilised to work out predictions of numbers. Apart from dealing with the pressures of today and next year, we are looking at what will be required in five, six, seven and eight years time. The resulting analysis dictates where new schools are needed or extensions to existing facilities required. The Harold's Cross site was purchased in order to meet an identified need and I have no doubt it will provide a good solution.

On the necessity of having a conversation around issues relating to temporary on-site accommodation, that is what happens in the course of the planning process. I have no doubt there will be ample time for all those issues to be addressed. We have had great success in recent years in dealing with such matters. The conversation does have to happen, which is why we have a planning process.

Autism Support Services

Senator Maria Byrne

I welcome the Minister of State, Deputy Finian McGrath, to discuss this important issue. My query relates to the number of autism spectrum disorder, ASD, assessments of need being carried out in the Limerick, Clare and Tipperary areas. I understand there is a significant backlog in this regard. I was recently contacted by a family in north Tipperary who, when they applied for a place for their child at a school's autism unit, were informed they needed a full ASD report for that child before their application would be considered. Unfortunately, the parents have now been told the facility is full. The child's assessment was to be done in August, which would have provided eligibility for enrolment in September, but because of the backlog and waiting list, they have been informed their child will not be assessed until Christmas.

I spoke to the relevant people in the HSE and in the different Departments, to the school principal and to the family, and I have kept in regular contact with all of them. My understanding is that if people are out sick or on maternity leave they are not being replaced and this is causing a problem. I am not saying people cannot be out ill or for some other reason but in the context of these necessary appointments, people should be replaced to deal with these valid cases. The school principal told me there were six places in the school but they are now full. I was told this child will be accommodated for next year but that means the child has to wait for another year. I have dealt with a number of similar cases. There needs to be a review of what happens with assessments when a person in that unit is out on leave for the long term. Also, the lines of communication with the families need to be kept open. This family received a communication on the week in August they expected to be called for their child's assessment indicating that it would be Christmas before the child would be called. That is quite a long wait for the child. It is a serious issue for the families concerned. My understanding from my communication with the HSE is that there is an unprecedented number of applications this year with respect to autism spectrum disorder, ASD, seeking an assessment of need. I would like hear what the Minister has to say and any solutions he has for resolving this problem.

Minister of State at the Department of Health (Deputy Finian McGrath)

I thank Senator Byrne for raising this matter. I have good deal to say on this issue and I share her concern about those particular cases. I will deal first with the broader issues involved and then respond to the issue she raised. I commend her on her work in the area of disabilities, particularly in the Limerick and north Tipperary areas. I thank her for her support of the Irish Sign Language Bill taken earlier this week. I appreciate that. I assure the Senator that the Government is committed to the provision and development of services for children with special needs and to improving access by these children to assessments and therapy services in so far as possible within available resources. That is a phrase that sometimes gets up my nose and I will speak about that later.

There has been a steady annual increase in the number of applications since the commencement of the Act in 2009. The current number of applications received in 2017 in the mid-west is 342, and the number is 362 for all of 2016. Of this number, 66%, or 237, of the applications have had assessment reports completed on time - the figure is 52%, or 222 for all of 2016. However, the HSE is facing significant challenges in respect of meeting the statutory timeframes that apply to the assessment of need process, given the number and complexity of cases. Assessment of need applicants whose needs are deemed too complex for assessment at primary care level are seen for assessment by the mid-west children's disability network teams. These applicants can require a longer period of diagnostic assessment. This can often require assessment observation across a number of settings such as home, school and with a number of allied health care professionals to best identify the child’s health needs. As such, these complex cases cannot be always completed within the 12-week statutory timeframe. Some require ten to 15 sessions under the assessment of need process in order to complete a comprehensive assessment of their health needs.

It is also important to note that the HSE has recognised that early intervention services and services for school-aged children with disabilities need to be improved and organised more effectively and this process is well under way nationwide. That relates to the concerns the Senator raised regarding the delays and the child not getting a school place. To me, that is unacceptable because every child has a right to education, particularly children with disabilities.

The HSE is currently engaged in the reconfiguration of existing therapy resources under the national programme on progressing disability services for children and young people aged from zero up to 18 years. The aims of this programme are to bring about equity of access to disability services and consistency of service delivery, with a clear pathway for children and their families to disability services, regardless of where they live, what school the child attends or the nature of the individual child’s difficulties. The aforementioned reconfiguring of disability services for children is part of the progressing disability services for children and young people programme, as there is evidence that where integrated teams are operating, the assessment of need process runs more smoothly.

The HSE disability services have carried out substantial work on developing standardised operational procedures for assessment of need. These procedures are currently being finalised and will be implemented by the end of the year. I have just come from a meeting this morning with senior officials in the Department of Health in Hawkins House where we discussed disability issues and this matter also came up. I will convey to the Department of Health and to the senior Minister the concerns the Senator has raised.

Senator Maria Byrne

I thank the Minister of State for his interest in this issue and I aware of his commitment to the area of disabilities. His answer was grand and I know that matters are being reviewed but it does not resolve the plight of the parents whose children have not got a school place this year because the HSE has failed to meet its commitment within the timeframe. I understand there are complications but there needs to be a review of how these issues are handled and that if people in the assessment unit are out on long-term leave, other people who are qualified need to be trained to carry out the assessments. I understand there may be a shortage of qualified people to carry out these assessments when people in the unit are out on long-term leave. Those are some suggestions I have for resolving this issue and I am sure the Minister of State will take them on board.

Deputy Finian McGrath

Absolutely, First, I give a commitment that I will take them on board and, second, the important element, as I mentioned in my reply, is the availability of resources. As a group, Senators, Deputies and Ministers must ensure they push for the maximum resources. We did a good deal of work during the Estimates process recently. There is also an issue regarding speech and language therapy services. We have managed to get an extra €2 million for 2018 to deal with that particular issue.

Regrading the issue the Senator raised, it is unacceptable that children with a disability are not getting their constitutional rights. I am a little taken aback by this and that no other solution was found for those particular families. I do not buy the idea that it is acceptable that a child cannot start school because there is a delay in an assessment. I will seriously follow that up.

As for the Senator's point about a review, we have an issue - there is no point in ducking and diving about it - with people being out on long-term leave and their places remaining unfilled. There should be some creative mechanism, as the Senator suggested, to address the issue of people who are out on long-term leave. People are out of work for legitimate reason, that is a fact of life and I accept that. If they are not replaced and the list of assessments builds up, that is unacceptable. There is a shortage of psychologists, speech and language therapists and occupational therapists - those are the professionals I hear regularly mentioned.

During my Estimates discussions with the Department of Health, the HSE and the Minister, Deputy Donohoe, these were all issues that I raised with them and I will continue to raise. I acknowledge we got an increase of €75 million in the disability services budget, which I welcome. I was looking for more but that comes down to the negotiations and that is life. The bottom line is that in the meantime, while we are trying to invest in and reform the services, we need to be able to deal with these types of situations. Every now and then when I return to my office following a meeting, I am contacted about emergency respite cases or cases of families in crisis and we have to deal with those situations. The issue the Senator raised about children with a disability not being able to go to school because of a delay in assessment is not acceptable. We have to act on that and come up with a solution. I give a commitment that I will go back to the HSE and all the senior people, particularly in the Limerick and Tipperary areas, and I will do my best for the Senator.

Senator Maria Byrne

I thank the Minister of State for that.

Medicinal Products Availability

Senator Catherine Noone

I thank the Minister of State, Deputy Catherine Byrne, for coming to the House on behalf of the Minister, Deputy Harris. I will be very happy to take her response and it is perfectly adequate to receive a response from the Department via the Minister of State.

The matter concerns the PKU issue and the drug Kuvan, on which there was a presentation in the AV room this morning. PKU is a rare blood disease that affects 13 or 14 babies per year in Ireland. It is known to be more prevalent in Ireland than in other countries - it is a Celtic gene, or so it was described this morning in the briefing I attended. The issue is that there is no known cure for this disease. It is diagnosed by a heel prick test and the Irish Government was revolutionary in introducing the heel prick test in the 1960s. As a young lad who suffers from PKU said this morning, we were really ahead of the game back at that time in dealing with PKU but, sadly, since then those affected by PKU have simply been advised to follow a strict no-protein diet. While that gives patients a certain amount of help and relief, if the levels of protein in their blood become too high, it affects them mentally and causes brain damage. We were shown videos this morning of young people who were behaving in a very distressed manner due to brain damage from high levels of protein in their blood.

The quality of life of patients and their families is a huge issue. PKU requires a highly regimented diet and lifestyle. The mother of the child who was at the presentation this morning described how they have to use a powder they buy in the pharmacy to make bread or an omelette. They colour it so the child knows it looks like bread, although the child has never tasted bread, but everything still tastes more or less the same. It is quite difficult for families to live with. The mother described how a sibling was very unhappy eating around the younger child because of the nice smells and so on. It is a difficult dynamic for a family to deal with.

Many Western countries have adopted the drug Kuvan, which has been described as a wonder drug. My question to the Minister of State is why Ireland has not decided that we should keep up with our intentions in the 1960s in being one of the forerunners on this. Kuvan received EU regulatory approval in 2009 and is currently approved for use and reimbursed in Austria, Belgium, Bulgaria, the Czech Republic, Estonia, France, Germany, Hungary, Italy, the Netherlands, Luxembourg, Norway, Portugal, Romania, Russia, the UK, areas of Sweden, Lithuania and Denmark. The Irish PKU community cannot see any justification for the drug not being available here.

While I know everything comes down to budgets, the harsh reality is that even when the gruelling PKU diet is maintained, people managing the condition still suffer with long-term permanent health conditions such as neurocognitive defects, neurological side effects, growth defects, bone mass reduction and obesity. This is very serious. I hope the Minister can find the budget to help the individuals with this disease. The eldest of the people who were diagnosed with this disease in Ireland are only in their 60s, so it is relatively new in terms of science and the medical area. I am very interested to hear the Minister of State's response.

Minister of State at the Department of Health (Deputy Catherine Byrne)

I thank the Senator for raising this very important matter. I am sorry the Minister cannot be here but he sends his apologies.

Medicines play a vital role in improving the overall health of Irish patients. Securing access to new and innovative medicines in a timely manner is a key objective of the Irish health service. The challenge is to deliver on this objective in an affordable and sustainable way. Under the community pharmacy schemes alone, more than 70 million prescription items will be dispensed in 2017 at an estimated cost of approximately €1.7 billion, taking account of fees and ingredients costs. In addition, the HSE will spend in excess of €500 million in 2017 on medicines through a range of other schemes, in hospitals and in other care settings, for example, in nursing homes.

Spending on medicines represents one of the largest areas of expenditure across the health service and it will continue to grow in the years ahead as our health service continues to meet the needs of our citizens. This is most welcome and can have a transformative impact on the health of patients in the future. However, as the Minister, Deputy Harris, has stated previously, the cost that some companies seek to charge for their medicines may result in a situation where certain treatments will never become available to patients. This is the case not only in Ireland, but across Europe. This is why it is essential that Ireland has a scientific, robust and evidence-based assessment process in place. This ensures that decisions in regard to the reimbursement of medicines are made on an objective and scientific basis, recognising the health needs of the population and other factors.

The Health (Pricing and Supply of Medical Goods) Act 2013 provides the legal framework in Ireland for such a process. This Act gives full statutory powers to the HSE to assess and make decisions on the reimbursement of medicines, taking account of expert opinion, as appropriate. The HSE follows the process set out in the Act for the assessment of all drugs. In reaching its decision, the HSE examines all the evidence which may be relevant, in its view, for the decision and will also take into account such expert opinions and recommendations it may have sought, including, for example, advice from the National Centre for Pharmacoeconomics, NCPE.

In December 2015, the company Merck Serono advised the HSE that the market authorisation for Kuvan was transferring to BioMarin in 2016. The HSE met with the new market authorisation holder in May 2016 and it advised the HSE that it would be submitting a health technology assessment dossier for Kuvan. The NCPE assessment of the new dossier was completed in September 2017 and the NCPE did not recommend Kuvan for reimbursement as it was not deemed cost-effective. The HSE assessment process is ongoing and the HSE will take into account the expert advice of the NCPE when making its decision, in line with the Health (Pricing and Supply of Medical Goods) Act 2013. The robust nature of this evidence-based assessment process helps to ensure that the health service makes the most efficient use of its finite resources.

Senator Catherine Noone

It is a disappointing answer which basically states: "We are not funding this." I cannot understand why, so I need to look into this further. I do not think we can leave it here, from what I heard earlier this morning. It is a disease that deserves attention. The individuals involved range from children to those aged up to 60. I need to get more information regarding the funding and how much the drug costs per patient, given the briefing did not go into that. I do not feel it is unreasonable to look for this and I am not going to leave the matter here.

Deputy Catherine Byrne

I note the concerns of the Senator and will bring back to the Minister the points she has made. At present, all I can give her is the information I have been given, although I wish I could give her more. I understand the difficulties people have, particularly when children at a very young age are experiencing difficulties within families, and in terms of how this affects them when they cannot participate, even by having a meal with their family.

I will bring the Senator's concerns to the Minister, Deputy Harris, and ask him to respond to the Senator on the cost if it is made available.

Senator Catherine Noone

I thank the Minister of State.