Parents of children with Cystic Fibrosis bring their campaign to the Dail – Enniscorthy Guardian, December 10 2016

Ballindaggin mother Julie Forster left the Dail feeling hopeful last Thursday following a presentation to push for the funding of Cystic Fibrosis drug Orkambi.

Julie was one of 14 parents from around the country to travel to Dublin in a bid to gain government support for the drug, which they believe will improve the quality of life for their children. Armed with photographs and stories of their beloved children, the representative group made a moving presentation to TDs on the reality of living with the illness.

‘We think it went very well. It is hard to say but many of the TDs said that they were very moved,’ said Julie, whose three-year-old daughter Ruth suffers from Cystic Fibrosis. ‘We had a very good attendance which we were happy with. James Browne was the only Wexford representative that I saw but we had many more from around the country.’

Though Julie did not make a presentation herself, Riverchapel mother Claire Merrigan spoke about her son Mason, the severity of his illness and the daily routine that he must endure. Several other parents from around the country, including those whose children are currently on the Orkambi trial, also spoke about their own experiences.

‘Some of the TDs asked some questions, mainly around the Orkambi figures on improvement. We explained that, while the figures don’t always look great, the reality is that a lot of people are doing well on it and a lot of money could be saved on hospital admissions if people were on Orkambi,’ explained Julie. ‘All of them promised that they would go further with it. There is nothing definite but anyone we spoke with afterwards said that they would support us. They agreed that a solution has to be found.’

The meeting took place only days after an exclusive report was published in the Sunday Business Post stating that the HSE drug committee had recommended against funding Orkambi, which has a €159,000 annual price tag per patient. It was reported that the committee did not view the drug to deliver enough benefits to justify its high cost. Julie and many other parents and sufferers around the country learned of the news through a Tweet – something Julie described as ‘disgraceful‘.

‘We are still very disappointed with how the news came out,’ said Julie last week. ‘The HSE still haven’t made a formal statement on it but they aren’t denying it.’

However, in the days following the leak, Minister for Health Simon Harris has reached out to overseas counterparts asking them to work with him to make Orkambi available for patients at a cost-effective price. He has assured patients that the process for accessing Orkambi is not over but said that more discussions and price negotiations with manufacturer Vertex are needed.

In the meantime, the parents group will continue to fight for their cause. On December 7, they will travel to Dublin to participate in a march to the Dail.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/goreyguardian/news/parents-of-children-with-cystic-fibrosis-bring-their-campaign-to-the-dail-35270351.html)

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Enniscorthy’s new social housing will be the first passive house scheme in country – Enniscorthy Guardian, December 10 2016

Enniscorthy will receive €1.5m in government funding to purchase eight new passive homes in what is the first scheme of its kind in the country.

Based in Madeira Oaks in Enniscorthy, the homes have been awarded an A minus BER rating which means that they produce more energy than they require. They were constructed by Michael Bennett of Enniscorthy Passive Developments and will cost €190,000 each.

‘In the past while, we have been looking at ways of addressing the housing supply issue and asked people with ideas to get in touch. Michael Bennett contacted us and we liked his scheme in terms of the way it uses sustainable energy, reduces the need for heating and also addresses the issue of fuel poverty,’ said Senior Executive Housing Officer Liz Hore. ‘We were delighted to get word that we will receive €1.5 m to work with him.’

These homes typically have energy costs of about €200 per year in comparison with the average household bill of €2,500. According to Ms Hore, the first two will be ready to move into in the new year.

She added that the scheme has allowed them to deliver fast-track social housing in Enniscorthy.

‘We have been discussing about the need to accelerate the delivery of social housing. These passive houses are being turned around within eight months.’

This is first time that passive homes have been acquired for social housing in Ireland. According to Ms Hore, they are hoping that their scheme will serve as a demo model for others around the country. She said that passive homes are the way forward, due to their affordability and lower fuel requirements.

‘They are ticking all of the boxes,’ she said.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: www.independent.ie/regionals/enniscorthyguardian/news/enniscorthys-new-social-housing-will-be-the-first-passive-house-scheme-in-country-35270416.html)

Enniscorthy mother won’t give up fight for her CF daughter – Enniscorthy Guardian, December 3 2016

News that the HSE won’t fund Cystic Fibrosis drug Orkambi is ‘devastating’ according to Julie Forster, but she is not going to let it prevent her from keeping up the fight to get access to the drug for her daughter.

At the weekend, the Sunday Business Post broke the news that the drug will be rejected for use by the HSE after their drug committee recommended against funding the drug at a recent meeting. According to the article, the committee, which includes several senior clinicians, decided it did not deliver enough benefits to patients to justify its €159,000 price tag.

Ballindaggin resident Julie Forster, whose three-year-old Ruth suffers from the illness, learned of the news through a Tweet on Saturday night, only days before she and members of a CF action group for parents will hold a presentation in the Dail to push for the funding of the drug.

‘The way it broke is just disgraceful. Members of the Cystic Fibrosis community and even Cystic Fibrosis Ireland learned of the news through a Tweet. We took that pretty hard and at first, we were wondering if it was misinformation,’ she said. ‘It just shows the way that the CF community is treated in general. Apparently Simon Harris didn’t even know about this. The fact that they went to the newspapers first is a disgrace.’

Julie said that she was ‘absolutely devastated’ to learn of the news, which according to her, has taken away a lot of hope for parents and sufferers of Cystic Fibrosis. The possibility that the drug may not be funded by the HSE would also bring the drug trials, that several people around Ireland are currently undertaking, to a halt. Though Julie’s daughter is not currently trialling Orkambi and is ‘quite well’ at the moment, she said that this could affect several families that she knows.

‘I am in touch with some families whose teenagers are on the trials and are doing really well. They have been on it for three years and can’t contemplate what life would be like if they are taken off the drug,’ she said.

Despite the huge disappointment brought by the recent news, Julie is still prepared to fight in the Dail on Thursday along with representatives from 14 other families who are affected by the illness.

‘This Thursday, we will still do our presentation and hope that we can get as many TDs as we can to back it. Simon Harris has the power to overturn the decision but he has said in the past that he wouldn’t. The drug company Vertex have issued a statement saying that they are still willing to negotiate on the price. So our options are either to negotiate on the price or make Minister Harris change his mind,’ she said. ‘We are hoping that we will come to some agreement.’

Julie has invited the five Wexford ministers to the presentation and has received responses from all of them. James Browne has promised to attend the meeting, while Mick Wallace said either he or a representative will be there. She was informed that Brendan Howlin will do his best to attend. Paul Kehoe is unavailable but has contacted the group to say that he will meet them on another date. Meanwhile, Michael D’arcy said that he could not attend.

Other members of the group nationwide have also called on their TDs to attend, while all are encouraging people to attend a separate march to the Dail on December 7.

‘We have received quite a promising response from TDs. Hopefully when they come out, they will learn more about the illness. It might help them to put faces to numbers,’ said Julie. ‘It is a matter of trying to get this funded and in my opinion, it has to be done. It is a matter of life and death to some people.’

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/enniscorthy-mother-wont-give-up-fight-for-her-cf-daughter-35251969.html)

Parents bring Cystic Fibrosis fight to Dáil – Enniscorthy Guardian, November 19 2016

An Enniscorthy mother will join with parents from across Ireland in the AV room in the Dáil on December 1 to push for the funding of Orkambi – a costly life-improving drug for people with Cystic Fibrosis.

Julie Forster from Ballindaggin will join with representatives from 14 other families to highlight their need for the drug Orkambi following an invitation by Sinn Féin to Leinster House. She will attend the presentation on behalf of her three-year-old daughter Ruth, who suffers from Cystic Fibrosis and could benefit from the drug.

‘Often when people with CF get older, they get a lot of lung infections and complications and have to go to hospital every six weeks. I know of some people who have been on the trials for Orkambi and their hospital visits have been brought down from every six weeks to once or twice a year,’ said Julie. ‘It is certainly not a cure but it improves their quality of life. It will allow kids to miss less school and in future, they may even to be able to hold down jobs which otherwise, wouldn’t have been a possibility.’

At present, Ruth’s condition isn’t too severe and Julie said that she has had no issues with her lungs as of yet. However, her illness has led to problems with her bowel and pancreas which inhibits her body from breaking down fats. This means that she must take enzymes daily, while she also does physio for twenty minutes twice a day to keep mucus off her lungs.

Julie and her husband Karl must bring Ruth to Tallaght Children’s Hospital once every three months, with a full health check once a year.

Though Julie said that Ruth is ‘lucky’ so far, she knows many others whose symptoms are much more severe and said she fears what the future could hold for her own daughter.

‘It’s so unpredictable. She could stay like this until she is 18 or she could get an infection next year. Some people don’t have problems until they are adults,’ she said. ‘It’s very scary. I’m in conversation with other parents whose kids are really well one week and the next, they are in intensive care.’

‘Even though I try not to think about it, it is always in the back of your mind.’

Orkambi, which has been developed by American drug company Vertex, is currently available in the US, France and Germany. The possibility of bringing it in to Ireland has given parents hope that their children could have a better quality of life. However, a ruling on the initial review by National Centre for Pharma Economics recommended that the drug is not funded due to the high cost. According to Cystic Fibrosis Ireland, the HSE and Vertex are currently in negotiations concerning on the price of Orkambi but whether this will result in a deal remains unclear.

‘It will cost about €150,000 per patient per year. I agree that the price has to be negotiated. But we need an update. It is almost six months and we still have no update on it,’ said Julie.

Following a recent meeting in the Dáil, Sinn Féin invited the committee for the Parents of Children with Cystic Fibrosis to give a presentation in the AV room in the Dail on Thursday December 1 at 9.30 a.m. Through their presentation, Julie said they hope to gain cross-party support for their plight and subsequently, get the push they need to get funding for the drug.

TDs James Browne, Paul Kehoe, Mick Wallace, Brendan Howlin and Michael D’arcy have been invited by the Wexford parents to attend. Julie said that so far, she has received a definite confirmation of attendance from James Browne, saying that the others haven’t guaranteed anything just yet.

‘We hope that when they hear the speakers and what they are going through, they will support it. Cystic Fibrosis is a very invisible disease. I knew nothing about it until Ruth came along if I am honest,’ she said. ‘We hope to gain support and push on the negotiations on the drug.’

‘Ireland has the highest incidence of Cystic Fibrosis in the world so this is more important for us than some of the larger countries.’

‘We are fighting to give everyone the opportunity to try Orkambi if they wish to. At present, we are being told that it isn’t showing enough improvement in lung function. They have to look at the bigger picture, not just at the figures. If they do, it is clear that it improves the quality of life.’

The group has pointed out how the lives of 600 people with Cystic Fibrosis could be prolonged for years if public money was better spent. For example, they have said that Wexford VEC pays €420,000 rent on an unused building, which could save 2.6 lives.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/parents-bring-cystic-fibrosis-fight-to-dil-35215465.html)

‘All we can do as parents is try to support our children in any way’ – Wexford People, October 29 2016

Children are being used as pawns in a game of chess between teachers and the government, said Mai Fanning, Director of the National Parents Council Post Primary (NPCpp).

Commenting on the looming strike among ASTI members, the Barntown resident said that, although it is not their dispute, the people being affected are the NPCpp, parents and students. She said that news of strike action has come as a shock to everyone, saying that nobody anticipated that a dispute would come to such a level that schools would be forced to close.

‘One would wonder, what’s the problem? There cannot be a problem that difficult that it cannot be solved. A huge game of chess is being played and our children are pawns in the middle being used to broker each side,’ said Ms Fanning, who is also Chairperson of the Parents Council in Loreto Wexford.

Ms Fanning said that the strike action could have a great affect on students, particularly those who are facing the Junior and Leaving Certificate exams.

‘We are always being told to mind our teens and be aware of their wellbeing and reduce their anxiety before the exams. Students hit the ground running in September and are 100 per cent focused on the exams from then on. They need the time in school to get courses finished, let alone set up a study programme to lead them into the exams. We all know that our children have enough stress going into their exam years,’ she said. ‘Parents told us that their teens have expressed that they are anxious about it.’

In recent weeks, Ms Fanning and other members of the NPCpp have received calls from concerned parents in light of the strike action. She said it is difficult to offer them advice as neither parents or the NPCpp are directly involved in the dispute.

‘I think it’s a difficult situation. There is no easy answer for us as we are not in dispute with anyone. It’s really hard to say what they can do. All we can do as parents is try to support our children in any way. Any days they are off, we need to ensure they have time and space to study in the home or elsewhere,’ she said. ‘I don’t know what other advice we can give apart from saying to support your children.’

The strike will also have a huge affect on working parents, according to Ms Fanning.

‘It is putting unnecessary stress on parents too. Parents are going to have to rearrange their work week and take days off work. We can’t have parents at home and missing work just because there is no school,’ she said.

The suggestion that parents can put themselves forward to supervise in schools during the strike has been made. However long waits for garda vetting and the need for training may cause difficulty if the situation were to arise. Ms Fanning said that even if that hurdle can be overcome, it won’t solve the initial problem.

‘If they can facilitate this supervision, perhaps parents could put themselves forward in an effort to help. But one doesn’t know if that would work at all. We are trying to solve an issue we have no hand or part in,’ she said.

‘Parents and children have been brought into this and it’s sad when situations like this arise as it can cause a lot of animosity towards teachers,’ she continued. ‘It’s very unfortunate as teachers are very well-respected in our society. They are looking after our future generations so that they can go forward to have good lives.’

Ms Fanning said that she would worry that public view towards teachers could change if the strike is to go ahead.

‘I would worry that people’s views would change because when you start to impact on a child’s life, parents will become very defensive,’ she said.

Ms Fanning is calling on the ASTI and the government to sit down and resolve their problems.

‘Nobody ever solves a problem by injuring a third party. The only ways issues are going to be sorted and the only way equity is going to be created among everyone is if all the parties involved sit down at a table and work this out and not get up from the table until it’s done. They can’t leave parents, children and ourselves in limbo,’ she said.

‘I sincerely hope the whole ethical issue of putting undue stress and worry on teens would be predominant in any of the decisions made when they have discussions. Dialogue between the parties involved is really what is needed if this problem is to be resolved.’

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/all-we-can-do-as-parents-is-try-to-support-our-children-in-any-way-35157893.html)

Report finds ‘no irregularities’ into Anne St site acquisition – Wexford People, October 22 2016

Director of Services Tony Larkin presented a report on the Anne Street files to the members, concluding that no irregularities on the part of Wexford Corporation had been found.

Mr Larkin began by outlining the context for the review. In recent times, a number of queries were raised by persons alleging irregularities concerning the acquisition of land in Anne Street for the offices of the Department of Social Protection and the Revenue Commissioners in the 1990s.

The issue was raised in the Dail by Deputy Joe Higgins. When the matter was brought to Wexford, Cllr Deirdre Wadding called for transparency in the matter and an investigation in the interests of the council. It was agreed that members of the council could inspect the files and bring any concerns to Mr Larkin.

Mr Larkin told the chamber last week that he met with a concerned group on two separate occasions to discuss their worries. The review outlined their complaint:

‘The Group of effected parties say that Wexford Borough Council by the manner in which they went about the assembling of the site for the new government offices in Anne Street, Wexford caused them to be misinformed, caused them to make incorrect commercial business decisions to their financial detriment and made them party to an irregular record of events that impacts on their good name and reputation.’

In following up these complaints, Mr Larkin relied on file records of the Council, held by MJ O’Connor and Co Solicitors and planning and land registry records. All of this information was compiled into the report presented at last week’s meeting.

In the report conclusion, Mr Larkin said that he found the written record on file regarding the land acquisition was ‘quite comprehensive’ and it was possible to develop a full understanding of these complex transactions.’

‘I looked to see if the Corporation had acted outside of its powers. I found no evidence to say it did,’ explained Mr Larkin at the meeting. ‘I was also asked whether anyone was paid compensation as part of the process. Only three parties were and these were the Book Centre in Waterford, George and Marjorie Murphy and the Hylands, who were sold a site on Trinity Street.’

In his report, Mr Larkin said that the only other party involved was Mr Ray Corish, who he found to be nothing but supportive and constructive in the process and who was not compensated in any way.

‘I was also asked if anyone was unfairly denied compensation and whether anyone’s interests were adversely affected. I haven’t managed to find any third party to say that this is true,’ he told the meeting.

Mr Larkin said that he had tried to answer all of the questions raised in the report.

Several of the councillors, including Cllr Malcolm Byrne, Cllr Willie Fitzharris and Cllr Oisin O’Connell, asked for some time to review the report, saying that they had only received it thirty minutes before the meeting.

However, Cllr Deirdre Wadding threw a spanner in the works when she called for the report not to be released, saying that new information had just been brought to her attention that could be useful.

‘In the interest of having a comprehensive report, I suggest we have one more meeting on this,’ she said, adding that she felt they should hand back the reports.

‘How is it that the very day you have new information, it is going to do away with what we have here?’ said Cllr Kavanagh. ‘I suggest you go away and read the report and if anyone has any concerns, they can request a meeting with Tony.’

Mr Larkin said that report was ‘difficult’ to put together, adding that he had been the victim of several personal attacks while compiling it.

‘I am not amending it,’ he said. ‘But I am happy to look at the report that Cllr Wadding has.’

‘There doesn’t appear to be reason for further investigation. The Council has been asked to examine records and it has done so.’

Mr Larkin said that he was happy for the report to be guarded as the final report at this point in time but suggested that, between now and October 28, councillors come to him with any concerns or queries.

‘The additional queries can be included in a revised report,’ he said.

Cllr Deirdre Wadding was quickly shut down by Cllr Paddy Kavanagh when she called for the report not to be released into the public domain.

‘That is it. It is over!’ he said.

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.independent.ie/regionals/goreyguardian/news/report-finds-no-irregularities-into-anne-st-site-acquisition-35137762.html)

Vision of the future for Johnstown Castle – Wexford People, July 30 2016

The doors of Johnstown Castle were thrust open last week as members of the public were welcomed inside to get a rare glimpse of the interior and learn more about future plans.

An estimated 1,200 people paid a visit to the castle during the two open days staged by Teagasc, who will soon begin a project to restore and open the building to the public. The event gave people the opportunity to learn about the history of the landmark and hear more about plans for its future.

This project will be staged by Teagasc in partnership with the Irish Heritage Trust and the Irish Agricultural Museum with the help of €7.5 million in Government funding. Though the groups have yet to seek planning permission for the ambitious plan, they aspire to have it complete by 2018.

‘A lot of work has taken place over the last number of years. We required a change in the Johnstown Castle Act which left the castle to the state for agricultural use,’ explained Head of PR with Teagasc Eric Donald. ‘We have now managed to secure funding from Failte Ireland and the Government to go ahead with the project.’

In the last number of months, Eric says they have been looking at potential plans and making decisions on how to make the first step. During the recent open days, the unveiled their plans to the public.

The project will see conservation works carried out on the three floors of the castle to make it safe and accessible before it becomes open to the public. An interpretive centre with information on the castle’s history and local stories will be positioned behind the agricultural museum next to a new carpark.

‘We want to have the carpark nestled into the landscape without imposing on the castle and the beautiful grounds,’ explained Eric.

The plan also includes new entrance arrangements. At present, there is one entrance used for the state agencies based on the castle grounds, while another is used by visitors to the castle.

‘We plan to alter the entrance to facilitate those coming to visit the castle. The visitor entrance is through the lovely old arches but unfortunately, buses can’t make it through them. There is also a safety issue when you have a large volume of traffic coming in through the old arches,’ explained Eric. ‘We plan to retain the old entrance with the arches while installing a new entrance for visitors beside it.’

According to Eric, the plans were met with a largely positive reaction from the many people who came to the open days.

‘I think there was a lot of goodwill towards it. A lot of people I met had relatives who worked in the castle in the past so some great stories came out of it,’ he said. The reaction was really positive. It was a really important exercise to open the doors and let people come in and see what’s going on.’

The next stage in the process is applying for planning permission and if granted, work will commence as soon as possible with an estimated completion date of 2018.

Commenting on the initiative Kevin Baird, CEO of the Irish Heritage Trust said:

‘We are delighted with the interest and passion local people have in this special place and we hope as the project develops everyone will find ways to get involved at the property to help us care for Johnstown Castle and share it with everyone.’

In 2015, Teagasc issued a public tender looking for a visionary partner to come on board with them to re-imagine the future of Johnstown Castle. The Irish Heritage Trust was announced as the successful applicant.

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/vision-of-the-future-for-johnstown-castle-34911296.html)