Fintan Warfield (Sinn Fein)
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I thank the Minister of State for coming to the House to address a vital issue that affects the formative years of many LGBTQI students and young people across this State. Last week, a report from the University of Limerick's school of sociology entitled, Exploring Homophobia and Transphobia in Primary Schools in Ireland, was published, further highlighting the issue of derogation of LGBTQI aspects of the relationships and sexuality education in social, personal and health education, SPHE, curricula by ethos-based schools. As the Minister of State is aware, the Education Act 1998 states that an ethos-based school can derogate from certain aspects of curricula in order to uphold the characteristic spirit of the school. In practical terms, this means that many pupils across the State are not taught and informed how to have safe sex, the boundaries of consent, relevant health information or how to have healthy relationships because of their sexuality or gender identity. This serves to cement the stigma and isolation that a young person feels during his or her formative years, when his or her sexuality or gender identity is not perceived as a norm, or moral as dictated to him or her by the ethos of a school.

The LGBTIreland report finds that must LGBTQI young people discover their sexual orientation or gender identity for themselves at an average age of 12 years. Many of the same young people who may have their first sexual experience before leaving secondary school are forced to attempt to piece together an informed, but potentially distorted, view of relationships and sexuality from heteronormative teachings in the hope of staying safe. Many relationship, sexuality education and SPHE teachers are on the record identifying their fear of the narrow confines of the syllabus and how best to deliver it.

I want to talk briefly about organisations like ShoutOut, BeLonG To and commend all organisations which support our young people. I want to point out that not all ethos-based schools confine their relationships and sexuality education, RSE, models to heterosexuality and that many work hard to ensure that their pupils are informed in an inclusive and equal setting.I also want to remark on the great work done by ShoutOut and BeLonG To in providing informative workshops and compiling teaching resources to aid schools in informing their students on these issues. I welcome the fact the Department has been proactive on the baptism barrier. While I may disagree on logistics, the steps taken will help secular families to access education. Similar steps must be taken to ensure that no child is denied informative health and welfare-based education. Are the Department and the Minister with responsibility open to a legislative remedy for this issue?

Catherine Byrne (Dublin South Central, Fine Gael)
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I thank Senator Warfield for his remarks. I am taking this matter on behalf of the Minister for Education and Skills, who cannot be here this morning. I thank the Senator for providing this opportunity to outline to the House the position on the teaching of the LGBT+ aspects of the social, personal and health education, SPHE, and the relationships and sexuality education, RSE, curriculums in schools. As the Senator is aware, A Programme for a Partnership Government, which was agreed in 2016, included the following commitment, "We will develop an LGBT Youth Strategy that will encompass education, youth services, mental health and other issues."

The Minister for Children and Youth Affairs has established an oversight committee to develop proposals for such a strategy. The oversight committee has an independent chair, the journalist Una Mullally. The Department of Education and Skills is among the Departments and agencies represented on the oversight committee. Civil society and relevant stakeholders are also represented on the committee. I understand the oversight committee has held a number of meetings. It has also conducted a series of public consultation events and last month held a more focused stakeholder consultation in Farmleigh House.

The LGBT youth strategy will come under the overall policy framework of Better Outcomes, Brighter Futures, the Government's national policy framework for children and young people. As the Senator no doubt knows, Better Outcomes, Brighter Futures identifies the achievement of full potential in all areas of learning and development as a key outcome under the framework. This outcome will also be an important strand of any recommendation arising from the work of the oversight committee on the LGBTI+ youth strategy.

Better Outcomes, Brighter Futures recognises the centrality of education and learning in the lives of children and young people. However, it also recognises that learning extends beyond formal schooling and encompasses the range of experiences and learning processes that enable children and young people to develop. A key element of the work in schools on working with LGBTI+ students arises from the national action plan on bullying. The Programme for Government 2011-2016 included a commitment "to encourage schools to develop anti-bullying policies and in particular, strategies to combat homophobic bullying to support students".

In May 2012, the Minister for Education and Skills and the Minister for Children and Youth Affairs jointly hosted a forum to explore ways to tackle the problem of bullying, including identity-based bullying, such as homophobic bullying and racist bullying, in schools. Following this, the Minister for Education and Skills established a working group on tackling bullying in schools. The working group included representatives from relevant Departments and agencies, along with representatives of civil society. It produced the action plan on bullying, which was launched in January 2013. The actions contained in the action plan focus on supporting schools, education and training, research and awareness raising, with the aim of ensuring that all forms of bullying are addressed.

Implementation of the action plan is ongoing, and as part of the implementation of the recommendations included in the action plan, national anti-bullying procedures for all schools were published in September 2013. These procedures require that the prevention of bullying must be an integral part of a school's anti-bullying policy. The education and prevention strategies that the school will implement must be documented in the anti-bullying policy and must explicitly deal with the issue of identity-based bullying including, in particular, homophobic and transphobic bullying.

The Department of Education and Skills supports anti-bullying initiatives aimed at young people, such as the Stand Up! campaign against homophobic and transphobic bullying, organised by BeLonG To, the national youth service for lesbian, gay, bisexual and transgender young people in Ireland. Last November, the Minister for Education and Skills launched Stand Up! 2016, and a number of post-primary schools across the country participated in the campaign for the week.

Fintan Warfield (Sinn Fein)
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The action plan on bullying, the LGBT youth strategy, and Better Outcomes, Better Future are welcome initiatives, but as long as an ethos-based school can choose aspects of its curriculum to uphold the characteristic spirit of that school we are in real trouble. This morning I lay in bed scrolling Twitter while trying to wake up, and there was a tweet from someone called Harrison Guy, who has just married his partner, Adrian Homer. When I read his tweet the penny dropped. He said that at 13 he realised he was gay and told himself he probably would never know love, but he was happy to say today that he was wrong as he married his partner. When LGBT young people realise we are LGBT we often spend five to ten years in the closet. After I realised I was gay I spent a period during which I told myself I would never love a partner, and today I am still trying to undo that erosive period. Schools, our homes and our communities are the places where we can change this, and the State has a direct responsibility for the lives of young people and their development and education. Speak to any member of the LGBTQI community and they will reiterate what I am saying. I was left out of something that I needed more than most. I am still struggling to negotiate intimacy and communicate love. LGBT young people deserve better and at present we are letting them down.

Catherine Byrne (Dublin South Central, Fine Gael)
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The Senator has spoken on a personal basis about what it is to be different from other people, or to identify as different from other people. My thoughts on it are very clear. Anybody who lives in a country and any child who goes to school has the right to be educated on all sexual relationships, no matter what relationship that is. We are living in a very different country from that in which lived in the past. Not too long ago, we a passed a referendum on gay marriage. It was a real opportunity to state this country has changed immensely over the past ten years.

Nobody who goes to primary school, secondary school or college should be discriminated against because of his or her sexuality, never mind the colour of his or her skin or the language he or she speaks. We live in a very different world. When young people feel they cannot openly speak about their sexuality in school and speak about who they are through their families, communities and, above all, through the education system will be a sorry day for us all. I have visited many schools, and teachers and principals have done a wonderful job in all the SPHE programmes, such as Walk Tall, to identify young people who may have, as the Senator said, come out of the closet. We are changing. Perhaps we do not have all our ducks in a row, but it is incumbent on us all, in particular the education system, to ensure no person is discriminated against because of his or her sexuality. Things are changing rapidly and we must continue this. I thank Senator for raising this very important issue.

Colm Burke (Fine Gael)
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I thank the Minister of State for coming to the House and agreeing to respond to the issue I raised on orphan drugs. Yesterday, the health committee heard presentations from the HSE and the body which approves drugs under the reimbursement scheme. There were also presentations from other organisations which expressed their concerns about delays.

Orphan drugs are drugs for small groups of people who have rare diseases. The Minister of State was on the health committee with me and knows that there are over 6,000 rare diseases. There could be 20 or 25 people with a particular rare disease and the medication they require is what we mean by orphan drugs. Directly or indirectly, there are around 375,000 people affected because their child or relative has a rare disease so orphan drugs is a big issue.

Several organisations here have raised the delay in processing applications for drugs for approval under the reimbursement scheme. Some 148 different orphan medicines have been approved at European level. In Ireland, only 53 have received approval under the drugs reimbursement scheme. In England it is 68, it is 75 in Spain, 84 in Italy, 116 in France and 133 of the 148 have been approved for reimbursement in Germany. Those are big countries and so the market is quite big, so something that might affect 2,000 people in Germany might only affect 20 people in Ireland, so we are not in the same bargaining position.

I fully accept that all the processes in the HSE and the Department are complicated because we are dealing with pharmaceutical companies which are a powerful lobby group in their own way but the result is that people who need medication are left sitting there. The average timescale from the date of application for one of these orphan drugs to it becoming available under the reimbursement scheme is 23.6 months. That figure was worked out for me by the pharmaceutical companies.

I am asking the Minister that we could look at the mechanism for this assessment and that we try to put in place a procedure which can fast track it and deal with it in a far more efficient manner. I am not criticising anyone involved in this and I know it is a complicated area, made more complicated again by the number of people doing the assessment and the people who are producing the drugs. For instance, yesterday the health committee was told that there was one drug which, if given approval, will cost €1 million per annum per patient. That is the kind of money we are talking about at the higher end, but there are also many drugs at the lower end. We need to try to improve the processing mechanism and that is why I raise this matter.

Catherine Byrne (Dublin South Central, Fine Gael)
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I will be taking this matter on behalf of Minister, Deputy Harris.

The issue of orphan medicines, with very small patient populations, and the price barriers for health systems in supplying them to patients, is worldwide. Orphan product manufacturers have exclusive patents and are monopoly suppliers. They can, and frequently do, seek extraordinary prices for these products.

The HSE seeks, where possible, to give patients early access to new treatments. However, it must work within the budget provided by the Oireachtas. The prices manufacturers seek for new and orphan medicines make this extremely challenging.

In the statutory reimbursement process, supported by the 2016 framework agreement with the industry, the HSE makes decisions on objective scientific and economic grounds. Criteria include the population's health needs, the product’s cost and clinical effectiveness, opportunity costs, the budget impact and available resources.

HSE decisions are supported by health technology assessments, HTAs, which systematically assess whether a drug is a cost-effective health intervention. Currently, most new medicines, including orphan products, undergo HTAs. However, not all applications have sufficient information for assessment and this must be sought. In addition, as HTAs frequently cannot demonstrate value for money for items at the price sought, lengthy price negotiations may be needed. These factors contribute significantly to the length of the approval process. Put simply, some manufacturers, as monopoly suppliers, use markets like Ireland to set very high prices which may not reflect the drugs' effectiveness and are unsustainable for our health service.

Under the 2016 agreement for very expensive treatments, especially where the price does not reflect therapeutic value, the HSE may negotiate price and supply conditions. As seen with some high profile drugs, reaching a sustainable pricing structure can be a long process.

Where the HSE decides to reimburse a medicine but considers it cannot do so from existing resources, it may inform the Department of Health. The Minister may, if deemed appropriate, bring a memorandum to Government on the funding implications. However, the price should still reflect value for treatment.

Since July 2016, when the agreement was introduced, the HSE has referred ten treatments, including Orkambi or Kalydeco, which it decided to reimburse in May. There are currently nine products under consideration, with a five-year cost of €120 million, of which eight were referred since May. The Minister, Deputy Harris, expects that the process will be completed shortly for these items.

It is right to exercise diligence when considering such huge commitments. With the sums involved and the competing demands across the health service, every effort should be made to secure the best outcome for the health service and the taxpayer. This includes seeking realistic and sustainable pricing and supply models for new treatments.

I am pleased to inform Senators that, as well as pursuing better pricing within our system, Ireland has this year begun working with other member states, through Beneluxa and the Valletta Declaration, to explore ways to share expertise and resources, so we can all gain access to new treatments in realistic time frames and at fair prices.

I have read the report of yesterday's health committee meeting and will report back to the Minister later today.

Colm Burke (Fine Gael)
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I accept the Minister of State's response. The drugs which are going for approval have already gone through the whole scientific process. First, there is no doubt that the drugs have been approved and would be of benefit. Second, there is the mechanism that comes into play thereafter. I accept where the HSE is coming from, that if a particular price is required for a drug then that influences its cost effectiveness. Nevertheless, if, for instance, a drug costs €50,000 for a patient, when assessing whether the drug is cost effective, we should look at how many weeks of the year that patient will be hospitalised. All those issues must be taken into account and I am not clear if they are. If a patient can be given a drug that means he or she will spend less time in the care of a hospital, there is a saving for the State. All those issues need to be considered.

Finally, we are looking to work with smaller countries. Would we be far better off working with a country such as Germany which has a far bigger population? If we could tie in with them to agree prices we might come out far better.I am not clear on it but it is something we should look at as well.

Catherine Byrne (Dublin South Central, Fine Gael)
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I agree with Senator Colm Burke that if somebody can have medication that will keep him or her out of hospital and be less of a cost to the State, that needs to looked at as well.

As I stated in the reply, there are currently nine products under consideration, with a five year cost of €120 million, of which eight were referred since May. The Minister, Deputy Harris, expects that the process will be completed shortly for these items.

I will stress to the Minister when I see him later that the five, as the Senator stated, particularly the ones ready to go, have gone through all the tests and should be brought into the system as soon as possible and help those people who are waiting. I will raise that issue specifically with him, but I will also raise the Senator's point that people getting medication would help them stay out of hospital and in the long run be less of a cost on the State.

Maria Byrne (Fine Gael)
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I welcome the Minister of State, Deputy Catherine Byrne, to the House and thank her for taking this matter.

Recently I met a man who is in his 80s and he is caring for his wife at home. She is able to avail of a medical card. She has multiple medical issues and a number of carers come to the house on a daily basis. In terms of his own application for a medical card, they are over the limit as a couple. However, what is not taken into account is the fact that he has to run the heating 24-7 and there are many things that he pays for. His wife is entitled to carers so many hours in the week but he himself pays for extra carers out of his own money. I have come across a number of couples in the same situation. I note the amount of money that he is saving the State by caring for his wife at home. She is in her late 70s. She rarely goes to the nursing home. She receives all her care and attention at home. A medical team comes regularly to her. This man, by making the choice to look after his wife at home, is saving the State a great deal of money.

However, the man himself is, unjustly, being disenfranchised by not being able to avail of a medical card. He has so many outgoings that at the end of every week a lot of the money that he receives is gone out in payments. I have come across a number of couples who have been in a similar situation. When people, especially those over the age of 66, and even into their 70s and 80s, are caring for loved ones at home, it is not taken into account that they have outgoings, nor is the time that they have to give taken into account. The day I met this gentleman he was coming back from a walk with his dog. He was able to go out for the walk with the dog because two of the carers were there at the time. Other than when they are there he does not move outside the door. He has had to give up his golf. He has had to give up his social life because he is at home with his wife 24-7. Consideration should be given that if a person is caring for somebody at home, he or she should equally be able to avail of the use of a medical card.

Catherine Byrne (Dublin South Central, Fine Gael)
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I apologise for the Minister, Deputy Harris, who could not be here.

I commend those carers who are over 66 years of age and, indeed, all carers who are caring for loved ones at home. This 24-7 duty of care is one that faces many families throughout the country and I understand the difficulties carers face financially, physically and emotionally, particularly for those who are older carers.

There is no doubt that carers make a significant contribution to the lives of those they care for. Their tireless and selfless work enables their loved ones to continue to live independently in their own homes and within their own communities.

As the Senator will be aware, under the provisions of the Health Act 1970, as amended, assessment for a medical card is determined by reference to financial means, including the income and expenditure of the applicant and his or her partner or dependants. The current income thresholds for persons aged 66 to 69 are those which apply under the general medical card scheme, which is a net weekly income of under €201.50 for a single person, or €298 for a couple. It is important to note, however, that there is a separate scheme for the assessment of persons aged 70 years and over. The income threshold for this cohort of people is under €500 for a single person or under €900 for a couple.

Carers should, therefore, apply for a medical card to the HSE and provide all supporting documentation for a full assessment to be made. In certain circumstances, the HSE may exercise discretion and grant a medical card, even though an applicant exceeds his or her income threshold, where he or she faces difficult financial circumstances. If a carer over the age of 66 years is the sole carer for his or her loved one at home, the carer might be enduring extra expenses, such as medical or social expenses. They should include all such information in their application.

There are no current plans to extend the provision of a medical card to carers over the age of 66 years who are caring for loved ones at home. The eligibility requirement for a medical card for this group will remain as a means test. The Senator might recall that the report of the expert group on medical need for medical card eligibility in 2014 recommended that a person's means should remain the main qualifier for a medical card.

There are a number of other supports also available to carers. Carers over 70 years of age are automatically entitled to a GP visit card and this is not subject to a financial means test. Additionally, carers who are aged over 66 years may be entitled to the carer's allowance. This weekly payment by the Department of Social Protection is made to those on low incomes who are looking after a person who needs support because of age, disability or illness. Carer's allowance is not taken into account during the application for a medical card.

I hope the information provided regarding the medical card options for carers is of assistance and will assist them in their application for a medical card.

Maria Byrne (Fine Gael)
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I thank the Minister of State and I appreciate her response. In this case, the man applied and made the case of what he was providing at home but, unfortunately, he was refused. I will now go back to him to encourage him to reapply. Consideration needs to be given to the fact that persons in their later years are looking after their loved ones. I understand that there is a bit of leeway there and I will be encouraging him to apply again.

Catherine Byrne (Dublin South Central, Fine Gael)
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I have great sympathy for the issue Senator Byrne has raised. I know what it was like when my two brothers looked after my Mam, who had dementia and other ailments, before she passed away. It is unconditional love - that is the only way of putting it. They were not paid for their services but they did it because she was their mother and they were able to have her at home and give her as much independence as possible.

It is difficult when older people are in the position where they have to look after their loved ones, and choose to look after them as well, which is very important to them. As the Senator stated, it does, in many ways, save the State a lot of money. I will relay back the Senator's request and the concerns that she raised, particularly when older people are looking after their loved ones as well, that maybe there should be some kind of criteria provided for them as well.

On the particular case raised, perhaps I missed a note but I want to ask the Senator did she say they already had a carer but it was not the person who was caring for the lady?

Maria Byrne (Fine Gael)
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They have carers but they themselves provide extra carers as well.