Topical Issue Debate

Rape Crisis Network Funding

The Rape Crisis Network Ireland, RCNI, represents 11 of the 16 rape crisis centres. Funding for the network was withdrawn in 2015 because Tusla wanted to take direct control of the data collected by the centres. This potentially includes significant personal data associated with rape survivors. Tusla has essentially made funding dependent on the rape crisis centres sharing the data of rape survivors who present to them. The agency has since entered into individual service level agreements with each centre in which it tied funding into the provision of data. Furthermore, the centres must compel consent from rape victims, which is ironic in the most horrific way.

There are serious concerns that the information used to generate statistics could inadvertently reveal the identities of rape survivors. These concerns are genuinely held by the rape crisis centres and many survivors who are fearful of identifying themselves to the rape crisis centres, not to mention Tusla. It is important to note that the same contracts that are being forced on rape crisis centres are also being forced on domestic abuse centres and similar organisations, although these are probably fewer in number. It is understandable that the centres are worried about highlighting this new requirement for data sharing as they fear it may scare victims away from using their services. However, this fear must be weighted against their desire to make people fully aware of how their data may be used. Given that this information is highly sensitive and personal, concerns about how it is used are legitimate.

A European Union directive on victims specifically states that victims of sex crime must be afforded an independent non-state option for assistance and contact. Tusla is trying to circumvent this requirement through its contracts. Writing recently in The Irish Times, the executive director of the Rape Crisis Network Ireland pointed out that while the State had a duty of care to survivors, "critically, the State itself at times presents risks to survivors - a principle acknowledged in EU laws on victims' rights". This appears to have been totally ignored with the introduction of these new contracts by Tusla.

The RCNI seeks the restoration of its funding, as I do, in order that it can continue to use the database it developed for this specific purpose more than a decade ago. The database has been recognised by the European Institute for Gender Equality as a model of best practice in data collection and protection. Given recent grave revelations regarding how data were treated in Tusla, it is understandable that people will be reluctant to provide such sensitive data to Tusla and trust in the organisation will need to be rebuilt.

Serious question marks arise regarding the reason Tusla is seeking this data and the Rape Crisis Network Ireland has not been satisfied with the reasons given thus far. The entire process has been fraught and certain aspects of it have been difficult to believe. I had to double check when I learned that Tusla had used the SurveyMonkey tool to collect some of the data from rape crisis centres.

Notes of an internal meeting released in response to a freedom of information request reveal that when asked if it should consult the Data Protection Commissioner regarding its new regime, Tusla's response was "that there was not necessarily advantage in making contact with the Data Commissioner as it would largely depend on the view of whoever responded and that there may not be a black and white view on all aspects of the query". In other words, Tusla decided not to ask because it might not like the answer. This is a worrying development.

I thank Deputy Catherine Murphy for raising this issue. She and I both support the work carried out by rape crisis centres nationwide. I am very pleased that this year an additional €1.5 million will be allocated to domestic, sexual and gender based violence services. In my instructions to Tusla for its 2017 business plan, I highlighted these services as a priority for me and the Government. This brings funding for 2017 to €22.1 million. This funding is much needed and a step in the right direction following cuts to these vital services in recent years.

Tusla, the Child and Family Agency, has statutory responsibility for the care and protection of victims of domestic, sexual and gender based violence, whether in the context of the family or otherwise. In this context, it allocates funding to 16 rape crisis centres, which are part of a network of 60 organisations providing services and includes 20 services providing emergency refuge accommodation to women and children and 24 community based domestic violence services.

It is my job as Minister and Tusla's job as the agency responsible to ensure that limited resources are targeted in order that vulnerable people who find themselves in desperate circumstances get the support they need. We cannot do this without data and information about where and what the need is and what services are available to address this need. Public money is being used to support citizens and we have a duty to members of the public and an obligation to those in need to ensure, in as far as it is possible, we meet those needs.

Tusla is developing its information capacity to do this and working with the organisations which support people in crisis to help us to get the right information to improve our services. All organisations need to count the same thing. We will only provide the right services to the right people in the right place at the right time if we have standard data gathering and reporting mechanisms. We need better quality data. In addition, Tusla requires all funded organisations to be compliant with data protection legislation and obtain the necessary consent from service users and others.

Deputy Murphy raised a question concerning the Rape Crisis Network Ireland, RCNI. As has been previously outlined in the House, Tusla made a decision not to renew funding to the RCNI in 2015. The agency was concerned that the RCNI database was not representative of all rape crisis centres and did not collect all of the data required by Tusla. This is a matter for the parties involved.

In 2016, Tusla established a project to address its data and information needs in respect of these services. The goal is to improve the data and knowledge systems. This will result in evidence based services being provided and will enable Tusla to meet national reporting obligations and forthcoming international obligations.

Tusla is very aware of the importance of striking the right balance between the rights of individuals to privacy and the ability of organisations to use data for the purpose of improving their services. It is important to highlight that Tusla only gathers aggregated data from funded services and does not require provision of personal data. I am sensitive to the concerns raised by the Deputy and other organisations and I have asked Tusla for further reassurance relating to concerns about anonymity.

My interest and energy are centred on maintaining a focus on the provision of services to the individuals and families who need them. Tusla is also planning for next year and the year after. We need to get it right for those who, unfortunately, will need these services in 2018 and thereafter. I will continue to prioritise the development and improvement of services to victims of domestic and sexual abuse. I am open to suggestions from Deputy Catherine Murphy who has been committed to the improvement of these services for many years.

The Minister and I both know how difficult it is for a person to present to a rape crisis centre. Very often, a survivor of abuse will be unwilling to provide information and will need time to get to know and trust the person who will provide counselling and assistance.

Where information is an upfront requirement such that it ensures somebody feels they have to turn and walk away from the service, the question must be asked whether the collection of data supersedes in importance the work the Rape Crisis Network is doing. As I said, the information gathering and database collection and protection system of the Rape Crisis Network is highly regarded at European level as best practice. In terms of some of the material I read relating to data protection legislation and Tusla's involvement here, the rape crisis centres have total responsibility. Even if Tusla has a data breach, it can fall back on rape crisis centres. I can provide the Minister with the legislation and material that highlights that.

I have no problem with the provision of high level information but far more than high level information is being sought. The rape crisis centres are compelling victims to provide information because if they do not do so they will lose the funding for their services.

The Deputy has raised a couple of key points, which it is important for me to reflect on and consider. The Deputy referred to the centres compelling data from people who are already in a traumatic situation and are victims of some form of violence. I understand what she is saying. This would have to be done very sensitively, in a way that does not scare people and assures them that the data they provide will be safely held by the provider. We need to have this data available to Government and other agencies such as Tusla in order to find ways to improve services for those same people. In my experience of working and getting to know some of the people who work in this context I know how sensitive they are in terms of the collection of that data. The concern is that this information is protected appropriately, especially as it is passed on to an agency collecting it from a national perspective. I take on board what the Deputy is saying.

In regard to the Deputy's question on whether there is a legislative basis for the collection of data, under the Istanbul convention and the EU victims' directive, which the Deputy identified, parties and member states are obliged to collect data for reporting purposes, again on the basis not only of improving services but ultimately to ensure we provide what is required for those people who seek to avail of these services.

Medicinal Products Reimbursement

As the Minister of State, Deputy Catherine Byrne, will be aware there is great anguish and concern about the availability of the drug, Respreeza, for the treatment of Alpha-1 antitrypsin deficiency, which is a genetic lung disorder affecting approximately 350 people in Ireland. The drug Respreeza is suitable for treatment for approximately 40 more patients than the 21 currently in receipt of it on a compassionate ground. As campaigners, we welcome that the company has made the drug available for a further two months, in March and April, but this means that late next month we will be again faced with a deadline set to expire, leaving patients facing the same anguish. This matter must be resolved. We are also concerned to learn that price is not the only reason for the non-reimbursement of Respreeza. It is claimed that Professor Barry from the National Centre of Pharmacoeconomics, the NCPE, believes that Respreeza does not work. Professor Gerry McElvaney has been doing research in the US on Alpha-1 antitrypsin deficiency since the early 1980s. He has continued that research here since then. He is the leading authority here and one of the top experts in Europe on Alpha-1. He has set up a research centre and done all of the work for the clinical trials. He also worked very hard on the purified protein that was used but all of this work appears to have been dismissed and disregarded by someone who has not even looked at the positive results of the 21 people who are being treated with Respreeza.

The United States Food and Drug Administration and the EU have not only approved Respreeza, the EU is reimbursing it for patients. It defies logic that Respreeza works everywhere else in the world but not in Ireland, apparently. We know from the clinical trial conducted in Ireland and in over 12 other countries that Respreeza has been life-changing for Alpha-1 patients. Not only has it been conclusively shown significantly to slow down the progression of the disease by 34% and, therefore, increase life expectancy, we know from research of patients in Ireland in receipt of it that it has made a huge difference in their daily lives. Irish people on Respreeza strongly believe that the drug has stabilised their condition, with almost 84% reporting an improvement in general symptoms. This was supported by a reduction in the frequency and severity of chest infections and associated hospital admissions. Chest infections per annum dropped by 68% while hospitalisations as a result of chest infection decreased by 69% per annum. People also reported improvements in their ability to work and to lead an active and fulfilled family and social life.

This form of therapy is already available for patients in eight European countries, including Portugal, Italy and Spain and in the United States. When will it be available for patients in Ireland?

I am taking this issue on behalf of the Minister for Health, Deputy Harris, who sends his apologies for not being here. I thank Deputy Brassil for raising the issue.

The HSE has statutory responsibility for decisions on pricing and reimbursement of medicines under the community drug schemes in accordance with the provisions of the Health (Pricing and Supply of Medical Goods) Act 2013. In reaching its decision, the HSE examines all of the evidence which may be relevant in its view to the decision, including the dossier submitted by the company. The HSE will take into account such expert opinions and recommendations which may have been sought by it at its sole discretion, for example, from the National Centre for Pharmacoeconomics, the NCPE. Under section 19(4) of the Act, the HSE is prohibited from making a decision to reimburse a medicine "except in accordance with the criteria specified in Schedule 3" of the 2013 Act. In the interest of time, I do not propose to read out the statutory criteria.

In line with the statutory assessment process the HSE has confirmed it has received a request from the manufacturer of Respreeza for maintenance treatment of emphysema in adults. The NCPE, following a health technology assessment, determined that the manufacturer failed to demonstrate cost-effectiveness of the drug at the price submitted and did not recommend it for reimbursement. Respreeza was also considered by the HSE drugs group and it did not make a recommendation for reimbursement. The HSE considers the NCPE assessment, the drugs group recommendation and other expert advice as part of its decision-making process. The HSE leadership team has accepted the drugs group recommendation. In line with the 2013 Act, the HSE is required to provide formal written notice of its proposed decision to the company.

Following receipt of the notice, the company may make further representations to the HSE if it so wishes and the latter will consider any such representations in advance of a formal decision. As the statutory process is still ongoing, the company will have the opportunity to have further discussions with the HSE.

I note the decision by the manufacturer, CSL Behring, to extend the compassionate access scheme by a further two months. It is important to point out that the operation of such schemes is at the discretion of manufacturers. However, the Minister, Deputy Harris, has previously stated that any attempt by manufacturers to link continued access for patients already being treated with a new medicine with decisions under the statutory reimbursement process is both inappropriate and unethical. Manufacturers should operate such schemes in a compassionate manner and not on the basis of commercial motivation. There should be no link between compassionate use schemes and reimbursement decisions, and manufacturers should be upfront with patients and clinicians from the outset.

I can only express my extreme disappointment at the weakness of the Minister of State's reply. The only aspect I welcome is the news that the HSE has agreed to re-engage with CSL Behring to seek to find a resolution. It is clear from what we have heard today that the Minister and the HSE accept the NCPE claim that the drug does not provide value for money and is not effective. However, every other source of information, including recognised experts such as Professor McElvaney, have found to the contrary. There seems to be a disconnect in terms of how the NCPE assesses drugs. We had the same situation with Orkambi and it is difficult to understand. There may be a broader discussion to be had as to how we reimburse high-tech drugs in general. Consideration might be given, for example, to funding research on the basis that any breakthrough drugs would be subsequently provided at a low cost base. However, that is a discussion for another day.

We are talking in this instance about 21 people who are being denied the lifestyle to which they, like everybody else, are entitled. The company is taking a humanitarian approach by making the drug available for a further period. I reject any suggestion its actions are being done on some sort of lobbying basis. The people who are suffering from this debilitating condition are living from month to month and it is not acceptable. Will the Minister of State relay to the Minister, Deputy Harris, and the NCPE the need for an urgent resolution of this matter? We are dealing with people's lives here and their suffering must not continue.

I will convey the Deputy's concerns to the Minister. As I outlined in the reply, the Minister has no control over how drugs are given out on a compassionate scheme basis. That is a matter for the company in question. I agree with the Deputy that people are suffering as a consequence of being denied access to this lifesaving drug. However, the manufacturers have a responsibility to their customers and it does not all come down to money. I will ask the Minister to reply to the Deputy regarding the concerns he has raised.

Wastewater Treatment

The issue I am raising concerns the pending case against Ireland by the European Commission at the European Court of Justice in regard to the failure by the State, between 2000 and 2005, to meet deadlines set for the upgrading of existing sewage treatment plants and completion of new plants. That failure is affecting 38 towns throughout the country, including Cork city, Fermoy, Mallow, Midleton, Ballincollig, Ringaskiddy, Youghal and Rathcormak in County Cork; Gweedore, Killybegs and Ballybofey in County Donegal; Tipperary, Roscrea and Thurles in County Tipperary; as well as, among others, Kilkenny, Dundalk, Enniscorthy and Killarney. Ireland had until the end of 2005 to ensure any urban area with a population base of more than 15,000 had adequate sewage treatment facilities to prevent discharges from those medium-sized towns into rivers, lakes and estuaries. It is a public health issue.

We are experiencing some turmoil in this House at the moment on the issue of water charges. In that context, I am concerned there may not be enough capital funding available to complete sewage and wastewater treatment plant upgrades. Irish Water has estimated that all sewage treatment plants will be upgraded by 2021, at a slated cost of €1.2 billion. In the current climate, however, with the ongoing debate on water charges, it seems likely there may be slippage on that target. Will the Minister give an assurance to the affected towns that they will have access to reliable, adequate and safe wastewater and sewage treatment plants? Will he further guarantee there will be no slippage in the budget line and that the targets which need to be met by 2021 will continue to be met?

I thank the Deputy for raising this matter and allowing me to clarify the issues he has outlined. The urban wastewater treatment directive mandates the required standards for the collection and treatment of wastewater from urban areas. The various deadlines for meeting the requirements of the directive passed some time ago, with the latest deadline being 31 December 2005. By that date, secondary treatment of wastewater should have been provided for all agglomerations with a population equivalent of more than 2,000 where the treated wastewater is discharged to rivers, lakes or estuaries. As such, the issue of compliance with the requirements of the urban wastewater treatment directive is a long-standing problem.

The European Commission commenced an infringement process against Ireland regarding its implementation of the directive in September 2013. This was followed by a supplementary letter of formal notice in September 2015. A reasoned opinion was then sent by the Commission on 30 September 2016, with the case being referred to the Court of Justice of the EU on 15 February 2017. The supplementary letter of formal notice of September 2015 identified compliance concerns for a total of 82 agglomerations. However, communications with the Commission as part of the infringement process have satisfied it that 44 of those 82 agglomerations should be removed from the case. While this indicates some progress has been made in improving compliance, 38 agglomerations remain of concern to the Commission and have been referred to the Court of Justice of the EU.

Since taking over responsibility for water services in January 2014, Irish Water has put in place a prioritised range of projects to deal with the historic deficits and lack of investment in wastewater collection and treatment across the country. Irish Water has identified key projects, in both its current and recently approved future capital investment plans, to address all instances of non-compliance in its wastewater treatment plants by 2021 for each of the areas identified by the Commission. The cost of these works is estimated at €1 billion. With regard to the specific locations to which the Deputy referred, in some cases, such as Fermoy, Mallow and Ballincollig, wastewater treatment is in place and resulting in compliant effluent.

However, works on the wastewater collection systems are planned by Irish Water to ensure that the collection systems convey all wastewater for appropriate treatment.

The Cork lower harbour main drainage project is of particular significance. Operations commenced at the new treatment plant in Shanbally at the end of 2016, providing full treatment of wastewater from Carrigaline, Crosshaven and Shanbally. The areas of Cobh, Passage West-Monkstown and Ringaskiddy will also be served by this new treatment plant at various dates in the future.

Investment by Irish Water in ensuring compliance with the requirements of the urban wastewater treatment directive is only one aspect of what is required in terms of the provision of wastewater services. Further significant and sustained investment will be essential to ensure ongoing compliance, facilitate future population and economic growth and protect the environment and human health.

The Deputy is right to raise the matter, as the House will debate the future of water in March and April on foot of the committee's report, which is due soon. Often, we forget that this issue also involves wastewater. People say that there is a right to water, but there is also a responsibility to deal with wastewater. It is a major cost. It is important that the investment plan that has been agreed with Irish Water is continued. There is a commitment from the Government, with the House's support, to continue that investment plan regardless of the debate on charges. The EU is conscious of the fact that our investment plan through Irish Water is helping us to address the issues that arise, which is essential for environmental purposes.

I thank the Minister of State for engaging with me on this issue and I recognise that blame is laid at successive Governments' doors. We have not tackled this issue as a country in as proactive a way as we should have.

If we are to have a debate on the future of water and wastewater treatment services, I am not convinced that the current investment plan will be followed through and that the Government can guarantee that capital expenditure will be made available to meet the needs of the remaining 38 towns and agglomerations identified by the European Commission. We must ensure that the capital expenditure is locked down regardless of the outcome of the committee's deliberations when it reports to the House. This is a public safety issue, one in which the health of our citizens comes into play, and we need to maintain an investment plan. There has never been a more opportune time to do so.

I worry that water and wastewater investment will slip down the agenda. If it competes with, for example, capital expenditure on roads, schools or hospitals, all of which are necessary, it will become the poor relation even though it is most vital to our needs. I hope that we can continue to ensure that the budget of €1 billion plus for the investment plan is locked down so that the 2021 target can be achieved and the needs of the 38 towns and agglomerations will be catered for.

I share some of the Deputy's concerns. The idea of introducing a single water utility in the form of Irish Water was to drive the necessary investment in the water and wastewater infrastructure that had been lacking for many generations. Thankfully, the previous Fine Gael-Labour Party Government and the current Government of Fine Gael and Independents supported by Fianna Fáil and others have recognised the importance of having a single water utility to drive the agenda of continuing investment in key, necessary infrastructure in the right parts of the country. I am happy to say that this will continue, given that the single water utility is protected and, with the agreement of the House, will continue its work separately from the arguments around charges and so on.

Establishing a utility was also meant to ensure the capacity to raise money via charges and taxation and in the form of borrowings that would be repaid through general taxation and people's contributions towards the cost of water. The polluter pays principle drove that. Under it, those who used water excessively or wasted it would contribute towards its cost, and rightly so. I referred to this matter last night.

Our capital investment requirements reflect the amount of water that we need and consume. If we found ways to conserve water, reduce consumption and encourage people to respect water better, which is often helped by having a metering system of some sort as well as a charge for excessive use, it would drive down the capacity requirements. In many areas, 40% of water is lost to the system through leakage and, in some cases, wastage. If we had a proper regime in place that could monitor and measure that, we would be able to prevent it and, therefore, invest less money in the capacity generation of water and water treatment plants. Investment in wastewater treatment is essential, but the requirement for that would be lessened if we could reduce water wastage.

It is important that investment be protected. I share the Deputy's concerns about there being no mechanism to guarantee it, but this Government has committed to it and other Governments might follow suit. We must continue the investment.

Is the €1 billion secured?

The capital plans have been proposed by Irish Water and we are committed to that investment. It is secure at this stage.

Regardless of the charging regime?

It is secure under this Government. We believe in the value and importance of investing in that. A commitment has been made and we will continue with the plans that have been agreed with Irish Water. There will be a discussion on the future of water and wastewater, but I hope that the House has a reasonable debate and the polluter pays principle takes precedent.

Sitting suspended at 4.27 p.m. and resumed at 4.57 p.m.