Topical Issue Debate

The first issue is in the names of Deputies Connaugton and Griffin but I understand it is to be withdrawn, pending a Minister becoming available.

I believe it will be taken next Tuesday.

I understand a Minister from the Department of Education and Skills will be available next Tuesday.

We received notification at 11.20 a.m. from the Ceann Comhairle that this issue had been selected for debate. I only received a call at 1.20 p.m. to inform me that nobody from the Department of Education and Skills was available to take it. Why was there a delay in telling us that nobody would be available? Our staff had left when the call was received but we were told we could take the debate today if we so wished. It is a very serious issue and we deserve a bit more respect than that.

I will mention your concern to the Ceann Comhairle.

I understand the Minister for Education and Skills is dealing with legislation. It is not as if any disrespect is intended.

The Minister for Education and Skills is attending a meeting of the education committee. I request that the Minister for Education and Skills, Deputy Jan O'Sullivan, take the issue next Tuesday. It is her direct responsibility and it is very important for her to be here to answer our concerns.

The Deputy can request it but there can be no guarantee.

No, that cannot be guaranteed, although Ministers endeavour to do their best to be here in person.

Schools Building Projects Status

I am delighted to have the Minister of State, Deputy Lynch, here, as she is very aware of this issue and she will relay the seriousness of the issue to the Minister. I thank her for attending.

We want Cloonakilla national school at Bealnamulla, which is the Monksland area of County Roscommon, to be included in the schools building programme. There is an urgent need for funding to progress the new school project at Cloonakilla national school. This south Roscommon school is located in an area with the fastest growing population in the midlands, and as far back as 2006, the Department acknowledged that enrolment projections at Cloonakilla national school indicated the need for a 16-teacher school. The Department subsequently acquired a greenfield site a year later for the development. A design team was appointed in 2011 and architectural planning commenced. The project has reached stage 2(b) of architectural planning, an advanced point which includes securing planning permission, a fire certificate, a disability access certificate and preparation of tender documents. Currently, many pupils are being accommodated in prefabs, with the school having to turn away new enrolments this year because of capacity issues. I understand a new portakabin joined the five others on the one-acre site in August.

I have called to the school on two occasions and I met the principal, Ms Mary O'Rourke. In my time going around to schools, I have not seen anything quite like this, with queues of parents outside. I ask the Minister to do everything possible to move on this issue. The school services the Monksland and Bealnamulla area, which has seen enrolments increase from 266 last year to 310 pupils this year. The school is turning pupils away. I ask the Minister to see if we can get the funding for this school as soon as possible.

I am taking this issue on behalf of the Minister for Education and Skills, and I will convey the Deputy's concerns to her. I thank the Deputy for raising this matter as it provides the opportunity to clarify the current position of the major capital project for Cloonakilla national school. The Deputy is aware of the demographic challenge facing the education system in the coming years. Primary enrolments, which have already risen substantially in recent years, are projected to rise by over 36,000 pupils by 2016, and they are set to continue to rise, with a likely peak at around 574,000 pupils to be catered for in 2018. This compares with some 526,422 pupils enrolled in primary schools for the 2012 and 2013 school year. It is vital, therefore, that there is sufficient school accommodation to cope with these pupil enrolments.

In order to meet the needs of our growing population of school-going children, the Department must establish new schools as well as extending or replacing a number of existing schools in areas where demographic growth has been identified. The delivery of these new schools, together with extension projects to meet future demand, will be the main focus of the Department's budget for the coming year. The Department would seek to provide additional accommodation to meet demographic growth but it would also aim to ensure maximum use of existing school accommodation. A priority, therefore, for the Department is to ensure that schools in an area can, between them, cater for all pupils seeking places.

For school planning purposes, Cloonakilla national school is contained in the Athlone school feeder area, which has been identified by the Department as an area requiring increased accommodation to meet demographic demand over the period between now and 2019. A major school building project at Coosan national school has already been announced and is being progressed as part of the Department's five-year construction plan to meet this demand. An additional project is also being progressed through the Department's architectural planning process in respect of Cloonakilla national school. The project at Cloonakilla comprises a new 16-classroom school with ancillary accommodation.

This project has reached an advanced stage of architectural planning, stage 2(b) which includes securing planning permission, fire certificate, disability access certificate and the preparation of tender documents. All relevant statutory approvals have been obtained and the design team is working on the preparation of the tender documentation. The design team expects to be in a position to submit the stage 2(b) report to the Department for review in the coming weeks.

Due to competing demands on the Department's capital budget, it is not possible to progress all projects within the Department's building programme to construction concurrently. However, the project for Cloonakilla national school is now well placed to progress to tender and construction in the event that further funding becomes available to the Department in the future. I hope this is of some help to the Deputy. I will relay his concerns on this issue.

I thank the Minister of State for her reply. It was not the reply that I expected but if some further funding becomes available, this is a needy case. The parents and teachers in that area are at their wits' end wondering why their school did not get the go-ahead. I am sure there are schools all over the country competing for funding. In my constituency this school is crying out for funding. I would like to see this being progressed. We have a greenfield site with portakabins, which does not make sense. If funding becomes available I would appreciate if this school were put at the top of the agenda. I thank the Minister of State for coming to the House today. I wish the new Minister for Education and Skills, Deputy O’Sullivan, well in her job. She is doing an excellent job.

Maybe the public does not understand this but while some schools have progressed to a certain point, others may not be as advanced or may not get planning permission or the other things they need. It is important that they are ready to take advantage when space becomes available on the list.

National Cultural Institutions

Our cultural institutions are a shop window to our culture and heritage. We have to note with alarm the concerns being expressed about the National Museum which says it has to cut back on tours and opening hours. The National Library and the National Archives are stretched to breaking point. Their funding compares very unfavourably with that in other countries, for example, Denmark and Scotland.

We all know the great affection people who were not born here have for this country. Some identify with it and that affinity brings a tremendous benefit because they come here as tourists and buy Irish produce, and are well-disposed to Ireland in all sorts of ways. Our cultural institutions must be resourced as part of that. The grant aid to the National Museum has been cut by 40% from €19 million to €11.5 million per annum. The National Museum and the National Library have also lost income from other sources, such as sales in the book shops. We lost our public records in 1922 which should make us all the more careful with our records. Only 1% of the National Library collection is conserved to international standards. In the National Archives there are 70,000 boxes of records that have not even been catalogued and cannot be searched.

These institutions do fantastic work on a shoestring. They are at breaking point, and have been for some time. The amount of money taken from them is disproportionately large in comparison with that taken from some other public services. Their contents belong to the Irish people. The Department’s role is to preserve and protect them. There has to be serious reinvestment in all those institutions. The amount of money needed, relative to the return, is small.

For example, people queue down the stairs in the National Library each July and August to avail of the genealogy services it runs. The library is trying to maintain such services, which matter greatly to the public. People are prepared to come into the library to engage with the records stored there. I would like to Minister to set out her approach to the budget with regard to all of these institutions. Does she accept that they are at breaking point at this stage? If so, it is obvious what approach she will take at the Cabinet table.

I thank Deputy Catherine Murphy for raising this matter. I agree with her that our national cultural institutions, including the National Library, are doing fantastic work even though they have unavoidably suffered cuts in their allocations in recent years. Every publicly funded body has had to deal with this difficult reality during the economic crisis. I assure the House that the Government has done its utmost to minimise budget cuts to the cultural institutions, in so far as possible, while being cognisant of competing demands on the public finances. Despite these challenging financial circumstances, the National Library has continued to attract increasing numbers of visitors. More than 250,000 people passed through the doors of the library in 2013. In addition, the library has had in excess of 7 million views on its website and its Flickr page and has approximately 10,000 followers on each of Twitter and Facebook. This successful deployment of social media shows that the National Library is a current and vibrant entity that continually reaches out to audiences of all ages.

The National Library's collection has increased in recent years through donations, legal deposits and purchases. There are more than 1 million printed books in the collection. Among the most notable acquisitions are the Fishamble Theatre archives, which is a valuable resource that contains early material from playwrights who went on to achieve great success. The library has also acquired the important Haberer Heaney collection of letters that are of academic interest and of interest to those who wish to obtain a fuller picture of this great man and Nobel laureate. The library recently acquired the Christy Brown archive, which will shortly be made available online.

The National Photographic Archive, which is a key part of the National Library, comprises approximately 5.2 million photographs, the vast majority of which are Irish. The subject matter ranges from topographical views to studio portraits, and from political events to early tourist photographs. The library maintains an active collecting policy. Material is constantly added to the collections, often following generous donations from various sources. If it is said that a picture paints a thousand words, then the comparative collection in the National Photographic Archive is no less than astounding. In addition, the archive has hosted several superb exhibitions on the Google cultural institute portal. This is an indication of how current and relevant its collection is.

The National Library has a varied collection consisting of an estimated 170,000 printed items, including historical proclamations, broadsides, broadside ballads, posters, playbills, handbills, concert, theatre and souvenir programmes, memorial cards, calendars, postcards, flyers and pamphlets. It is sometimes easy to overlook such items, which represent a unique snapshot of the national consciousness at a given time. They encapsulate a point in time in Irish history.

The remarkable progress and work of the National Library is to be commended, particularly in a time of economic challenges. We are all aware of the current difficulties. We are working to resolve them in order to put Ireland back once again on a solid financial and economic footing. This will benefit everyone. The dedication and professionalism of the staff and board of the National Library will continue to ensure this national collection is available for future generations.

I recognise much of what the Minister has said from the National Library report that is on my desk. I did not ask for a synopsis of that report; I wanted to hear what the Minister intends to do about it at budget time. Does the Minister accept that we are at a critical point? The Oireachtas allocation to the National Library was €12 million in 2008, but it is just €6.3 million this year. The upshot of this reduction is that fewer people are employed. It is not the only source from which income decreased. The income from royalty and reproduction has decreased by 84% since 2007. Income has decreased across the areas from which the National Library can get income. I would not like to patronise the various institutions by saying they are doing great work without also calling for that to be recognised through the provision of the necessary resources to enable such work to be done.

The National Library's core responsibility is to protect the actual material for which it is responsible. It is not being given an opportunity to carry out that role. There are ways in which things could be done better while reducing costs. I suggest that there could be a combined look at how material is stored off-site in various locations. If someone has to physically retrieve material from three different locations, it can be quite costly. The front-line services to the public are being protected as far as possible. The cost of that is seen in the inability to properly conserve, catalogue and place in the public arena certain kinds of records. We are not getting to see these treasure troves because this service is underfunded. Given that 400,000 people go to the National Museum each year, the notion that we are going to cut down on guided tours and opening hours is absolutely scandalous. At a time when we are trying to build up our tourism numbers, it seems that certain services could be withdrawn because of underfunding in this area. There needs to be a serious look at this. Investment in this area is necessary. I want to hear what the Minister has to say about her approach to the budget. Does she accept that a critical point has been reached?

As I have said, it is unfortunate that all the national cultural institutions, including the National Library, have unavoidably suffered cuts in their allocations in recent years. I accept that it has been very difficult for them. As Minister, I will try do my utmost to minimise any future budget cuts to the cultural institutions. I will do what I can to that end, while being cognisant of competing demands on the public finances.

On the question of storage, I remind the Deputy that the National Archives warehouse project has been approved and will commence in 2015. The National Library is talking to University College Dublin and Trinity College to see whether a combined solution is economically feasible. The amount of genealogical material made available on the Internet by the National Archives has increased in spite of the tight budgets. The 1901 and 1911 census returns have registered more than 1 billion hits. This is a testament to their popularity. I will be pursuing with the boards of the National Library and the National Archives the digitisation of material in both institutions.

Earlier this morning, I spoke to John Harnett, who is the chairman of the Inspiring Ireland international advisory board. I foresee the exciting prospect of making our cultural collections available online. While the cutbacks are acknowledged, positive developments such as the visitor numbers and the acquisitions must also be recognised and applauded. These achievements have resulted from the hard work of the staff.

Medicinal Products Supply

I thank the Ceann Comhairle's Office for affording me the opportunity to raise this extremely important topic. I ask the Minister for Health to intervene to ensure that the HSE puts in place an early access programme for patients with hepatitis C to a new direct acting antiviral drug. We all know that these patients were infected with hepatitis C through no fault of their own. Their infection came about as a result of negligence on the part of the State.

A couple visited me at my constituency office before the summer recess with a harrowing tale. My constituent, Mrs. Kennedy, who does not mind being named in the House, was infected with hepatitis C 15 years ago. At that time, the then Minister for Health, Deputy Michael Noonan, assured her and approximately 1,000 other patients who were accidentally infected that they would receive the best possible care and treatment. Mrs. Kennedy is now dying from cirrhosis as are around 200 other patients. There is a legal issue here as the court judgment stated that if the condition of patients deteriorated and they developed cirrhosis, their cases could be reopened. However, these people do not have the time to go to court. The Kennedy family examined the possibility of purchasing the new drug privately abroad but to no avail. The cost of purchasing the drug here is close to €50,000.

A consultant from St. Vincent's University Hospital has told me that the drug Sovaldi offers my constituent and many other patients a 90% chance of survival. It has been approved in almost all other European countries but Ireland is lagging behind. The consultant wrote to me informing me that Mrs. Kennedy attends the hepatology clinic at St. Vincent's University Hospital in Dublin and that she was infected with hepatitis C following a contaminated blood transfusion many years ago. She has established liver cirrhosis and has developed a complication called ascites. Without viral eradication, according to the consultant, Mrs. Kennedy's prognosis is poor, with an annual risk of further decompensation or death of approximately 20% per year. Viral eradication could dramatically alter this prognosis and is potentially life-saving. He stated that the current standard method of care, which includes the drug Interferon, would be deleterious to Mrs. Kennedy, given the advanced stage of her liver disease. The consultant maintained that exciting developments in the field of hepatitis C virus biology have led to the development of new direct acting antiviral, DAA, drugs. These agents provide, for the first time, an effective curative therapy for patients with advanced cirrhosis.

The consultant went on to explain that the first DAA drug with potential in these patients has recently been licensed in Europe. The Scottish Medicines Consortium completed its assessment of Sofosbuvir and approved it for use in Scotland. Recently, an early access programme using Sofosbuvir and Daclatasvir in combination has been approved by the NHS in the UK to treat a cohort of 500 patients whose condition is similar to that of Mrs. Kennedy. They are in the advanced stages of the disease and are likely to develop serious complications while awaiting National Institute for Health Care and Excellence, NICE, approval for more widespread use. Early access programmes have been developed and are under way in several other European countries and are providing life-saving therapy to the most critically ill patients. The consultant also informed me that a funded early access programme for DDA drugs in Ireland would have an enormous impact on Mrs. Kennedy and similar patients, with expected cure rates of greater than 90% and a risk reduction rate for complications from cirrhosis and death of in excess of 80%.

Does the Minister of State agree that these high-risk patients need an early access programme now? Such a programme could be initiated through the Irish Hepatitis C Outcomes Research Network, ICORN, at the National Centre for Pharmacoeconomics. If something does not happen in the next few months, these patients will die.

I thank Deputy Troy for raising the issue of hepatitis C which is not just topical, but also a significant public health problem with its associated burden on individuals, families, health services, communities and society. We all know the origins of the difficulties for many hepatitis C patients in Ireland, although the people to whom Deputy Troy refers are not the only sufferers in the country. We are talking about a specific cohort of people in this instance but there are other hepatitis C sufferers in Ireland.

The development of new and innovative medicines for the treatment of hepatitis C is an opportunity to alleviate the burden for patients, their families and society as a whole. There are a number of new direct acting antiviral, DAA, therapies licensed in Europe for the treatment of hepatitis C. It is expected that several other therapies will be licensed in the coming months. However, these products have a significant cost. One of these new treatment regimens includes Sofosbuvir or Sovaldi which has been the subject of recent attention. The HSE received an application in February 2014 for the inclusion of Sofosbuvir in the GMS and community drugs schemes. The application is being considered in line with procedures and time scales agreed by the Department and the HSE with the Irish Pharmaceutical Healthcare Association for the assessment of new medicines. I am sure that Deputy Troy would agree that we must ensure the safety of patients in Ireland.

In accordance with these procedures, the National Centre for Pharmacoeconomics initiated a pharmacoeconomic evaluation of this new product in June 2014. The health technology assessment report on Sofosbuvir is expected in mid-October. This evaluation will provide detailed information on the potential budget impact of the medicine. It will also assess whether the products are cost effective at the price quoted by the manufacturer, and I am sure the Deputy will accept the importance of that point. This evaluation provides valuable information to enable the HSE to take a decision on the funding of this new medicine and ensuring that it is clinically appropriate, fair, consistent and sustainable.

With the advent of these new treatment regimens which are better tolerated by patients, it is necessary to consider how to optimise access to these treatments in a managed way over the coming years. In that regard, my Department is chairing an expert advisory group to advise the Minister for Health on the optimal management and treatment strategy for patients with hepatitis C. This group will advise on the development of a public health plan that will focus on the treatment and management of people with hepatitis C which will lead to reduction in prevalence in the population and a reduction in infection and spread of hepatitis C. Decisions around the feasibility of a HSE early access programme to these drugs will be considered in this context.

I hope this information is of some help to the Deputy. We are all very conscious of the urgent need as outlined by him.

I thank the Minister of State for the response but she has not answered my fundamental question, namely, whether the Department of Health will instruct the HSE to initiate an early access programme. Quite frankly, we do not have time for feasibility studies. The Minister of State made reference to significant costs but these people were infected as a result of negligence on the part of the State. What cost do we put on a person's life? That is the fundamental question. We do not have time to wait. Other countries did not wait. This drug is being used in England, Scotland and other countries across Europe.

The Minister of State also made reference to the expert advisory group - the setting up of which I welcome - which will look at the long-term roll-out of treatment for these patients. However, those same patients feel that they do not have any input into that process. They are also very concerned that they also have no input into the decision-making process regarding an early access programme. That is the issue we are discussing here today. We are talking about a specific cohort of patients who urgently need an early access programme.

These patients have been identified. The Minister of State is worried about costs. That group, ICORN, has identified the patients most in need of this treatment and it is willing to identify the patients who should avail of the early access programme so that we can keep control of the costs.

We need to act now to ensure that my constituent and in the region of 200 others do not die. We simply do not have to time to wait. If we do not act now, people will die prematurely.

I am not certain Deputy Troy heard fully all of my reply. I stated that the health technology assessment report is expected in mid-October. We are almost at the end of September and it is just another month away. It is important, and I am not dismissing for one minute the urgency of all of this.

We are also taking a serious look at clinicians who would have to identify who within the 200 to 300 - it would not be only 200 - would have significant clinical need. We all are conscious of that. Equally, for our own sake - because there have been issues with medications, although I am not saying that in this case it is so - it is important that within our own domain we have clinical governance over what we use in this country. I have always been a strong advocate of that. We cannot merely accept what others say.

In terms of cost, which is an issue, it is a terrible pity that we do not have some kind of collaboration within the European Union on such drugs. If there were and if one decided to use it, the bigger the market the better the deal and, therefore, the better the service one would be able to get for those who need such extremely expensive but innovative and exciting drugs. We must accept that medication is changing constantly.

It will be mid-October when we will have this report back to us and a decision will be made then. That is not too long to wait. If we were talking about June next year, I would be agreeing with Deputy Troy.