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)

Enniscorthy gardai seize €40,000 worth of drugs in Bunclody apartment – Enniscorthy Guardian, August 6 2016

An estimated €40,000 worth of cannabis and amphetamines were seized during a raid on a growhouse at a Bunclody apartment on Thursday of last week.

The haul, which comprised of an estimated €20,000 worth of cannabis plants and €20,000 of suspected amphetamines, were uncovered during a search carried out by the District Drugs Team assisted by the Local Task Force Unit. A male in his twenties was arrested on suspicion of the sale and supply of drugs and is expected to appear before the court at a later date.

Gardaí said the drugs had an estimated street value of €40,000, subject to analysis.

Enniscorthy Gardaí also seized what was described as a small amount of cocaine at a house in an estate in Enniscorthy town on Saturday.

Gardaí and the local drugs unit carried out a search at the home where they uncovered the drugs, which have an estimated street value of between €50 and €300. Files concerning five suspects are being prepared for the DPP.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/enniscorthy-gardai-seize-40000-worth-of-drugs-in-bunclody-apartment-34929865.html)

Oylegate bypass may not go ahead despite earlier indications – Wexford People, July 9 2016

Plans to extend the M11 south of Oylegate after the completion of the Enniscorthy bypass appear to be ‘dead in the water’ according to Fianna Fail TD James Browne.

But the County Council remain hopeful that the project can proceed, despite the Fianna Fail deputy’s concerns.

Work on the proposed four km extension to the southern end of the M11 Enniscorthy Bypass was expected to begin at the end of 2018. However, in a letter from Transport Infrastructure Ireland, Deputy Browne was informed that the proposed Oylegate to Enniscorthy bypass road improvement scheme is not included in the Government’s capital investment plan from 2016 to 2021. It went on to say that ‘the further advancement of the proposed scheme cannot be accommodated in the national roads programme at present.’

‘The letter doesn’t just seem to be saying it won’t be advanced. It seems to be saying it’s not going in ahead. To me, it looks like it’s dead in the water,’ explained Deputy Browne, who received the letter after he put a parliamentary question to Minister for Transport, Tourism and Sport Shane Ross.

‘I was under the impression that it was to go ahead following announcements during the General Election and articles I have read. However, the government have decided that it’s not part of their plans.’

Director of Services with Wexford County Council’s Road Department Eamonn Hore said that the extension was never part of the government plan but said that they are ‘quietly confident’ that it is still going ahead.

‘It never was part of the government plan. The contract is for the bypass of Enniscorthy but we have made the case that it doesn’t make sense to stop there. At the very least, it should stop after Oylegate,’ he said.

‘The TII agreed to fund the exploration if it,’ he continued. ‘On foot of the recommendations made by Wexford County Council, they have decided to look at it.

‘It’s definitely going to happen at some stage but we can’t put the money in place until we have examined the different routes.’

Mr Hore said that they are taking the process in steps and still hope to have the design and funding secured so that work will commence at the end of 2018.

Mr Hore said that it was not in their view that the extension had been scrapped, adding that he thinks wires have been crossed.

‘From every point of view it makes sense not to bring the dual carriageway to a halt north of Oylegate and we are being listened to. It was never in the programme.’

In February, County Manager Tom Enright announced that approval had been received from Transport Infrastructure Ireland that the M11 project could proceed beyond Oylegate. Speaking to this newspaper in June, he said he hoped that the proposed extension would get underway at the end of 2018. He went on to say that the county council was currently arranging the procurement of consultants to carry out the detailed design work for the extension, which will cost around €30 mn.

However, Deputy Browne was not hopeful following the TII response.

‘The bypass is necessary. If it doesn’t go ahead, Oylegate will be the only village or residential area between Belfast and the Rosslare Europort. This will mean a lot of cars and heavy goods vehicles will continue to travel through Oylegate.’

‘The village will effectively come to a standstill,’ added Deputy Browne, who said that he expects traffic jams similar to those in Enniscorthy to hit the village.

According to him, the village is already dealing with heavy traffic at certain times.

However, Oylegate-based councillor Willie Kavanagh doesn’t view the current traffic situation as an issue and said that he has not witnessed any traffic jams during his 40 years in the village. He said that, if the bypass doesn’t go ahead, he doesn’t expect traffic to increase.

As owner of The Slaney Inn, Cllr Kavanagh said the bypass will not affect his business whether or not it goes ahead, saying that most of his customers are local. However, he said it could have a huge hit on the local supermarket, restaurants and filling station in the village, which rely on visitors and passing motorists for trade.

However, according to Deputy Browne, scrapping the extension will have an impact on Oylegate and the wider community.

‘It is bound to have a knock-on effect for Wexford town. if there are serious transport problems for those travelling from Wexford to the airport and other places, it is going to have an impact on business.’

(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/oylegate-bypass-may-not-go-ahead-despite-earlier-indications-34870325.html)

Oliver Walsh is new Enniscorthy Chairperson with Keith Doyle as vice – Enniscorthy Guardian, July 2 2016

Outgoing chairperson Cllr Paddy Kavanagh reflected on a ‘very busy year’ before he handed over his seat to Cllr Oliver Walsh.

Cllr Kavanagh thanked all of the members for their cooperation and help during his time as chairperson. Though he said there were many great events, he said there was one that stood out in his mind – the Monday of the 1916 commemorations.

‘I felt, as an Enniscorthy man, proud to represent you all on the day,’ he said. ‘It is one of the best days we have ever had.’

Cllr Kavanagh also said that a certificate presentation evening to descendants of those involved in the Rising was extremely successful.

‘People enjoyed and appreciated it as we did,’ he said. ‘It didn’t just happen. It was put there by the hard work of a lot of people. I would like to take this opportunity to thank everyone for everything they did for Enniscorthy.’

Cllr Kathleen Codd Nolan proposed that Cllr Oliver Walsh be elected as the new chairperson, saying that he had ‘many years of experience’. Her proposal was seconded by Cllr Keith Doyle and passed without any rejections or further suggestions.

‘I hope to work for the betterment of Enniscorthy town and district,’ he said.

Cllr Willie Kavanagh proposed Cllr Keith Doyle as the Vice Chairman. His proposal was seconded by Cllr Barbara Anne Murphy and supported unanimously.

(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/oliver-walsh-is-new-enniscorthy-chairperson-with-keith-doyle-as-vice-34837682.html)