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)
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)
Wexford Drama Group celebrated their 50th anniversary in theatrical fashion with a celebration in the Irish National Heritage Park recently.
The group pulled out all of the stops to ensure the night was unforgettable, with plenty of drama, music and nostalgia to keep the crowd going. Over 60 people attended the event, which marked an end to the celebrations for this year.
Mayor of Wexford Frank Staples held a Civic Reception for Wexford Drama Group at the beginning of the evening. He spoke about the history of the group and, on behalf of the people of Wexford, expressed his pride in having such an organisation in the community.
It was a nostalgic evening for many as members from years gone by joined together with current members. Three of the former members – Des Waters, Jean Gould and Noreen Colfer – were part of the original group founded 50 years ago and in honour of this, they were presented with a lifetime membership by the current members. Throughout the night, different generations of the group performed short pieces, while old memorabilia such as posters and photos were dotted around the venue. A particular highlight was a moving video featuring interviews with some of the older members, which was compiled by John Michael Murphy.
Chairperson of the group Carol Long said a few words to the crowd, as did Phil Lyons, who shared some of his memories about his years in the group. Phil was also part of the event’s organising committee, along with Aine Gannon, Hilda Conway and Paul Walsh.
To top everything off, everyone enjoyed a meal, music by Damian Nolan and plenty of dancing until the early hours.
‘It was a really great night. It was lovely to mark the occasion as people do come and go. The event got people back in touch with the group,’ said PRO of Wexford Drama Group Tom O’Leary.
The night followed on from an event in Wexford Library the previous day, during which excerpts from the group’s first play ‘The Heiress’ were performed by former and current members. The play was produced by the group back in 1966 and in honour of the occasion, original cast members Jean Gould and Noreen Colfer played their parts once more. An exhibition of photographs and memorabilia of the last 50 years was also unveiled.
Following a successful weekend, the show must go on for the drama group. The will now turn their attention to their next production ‘Portia Coughlan’ by Marina Carr which will hit the Arts Centre stage in February.
(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/wexford-drama-group-celebrates-50-years-in-the-spotlight-35270067.html)
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)
Having been born with a visual impairment, Clonard resident Emer Mulhall has faced many challenges throughout her life yet she has embraced each one with great enthusiasm.
Now, on recently been elected this year’s President of the Wexford Toastmasters Club, she is gearing up to take yet another one on board. Though such a responsibility could send even the most organised person into a frazzle, Emer is ready for anything that comes her way.
‘Its a challenge but I’m well used to challenges,’ said the Ashford native. ‘Despite being visually impaired, I have gone skiing and have a degree in Modern English and History from Trinity.’
Emer, who has been a member of Toastmasters for seven years, initially put herself forward for another role on the committee. However, she was thrilled when her fellow members suggested that she take up the reins as president.
‘It was a very nice feeling to be honest. I felt really good because it showed that the committee had faith in me,’ she said.
Following a survey of the members to see what changes they would like to be made, Emer made some plans for the year ahead including increasing the number of speeches people make and the incorporation of a questions and answers corner.
‘The questions corner will give new members a chance to ask anything they like about Toastmasters. It gives them an opportunity to learn what it is all about,’ she said.
Emer, who is completely blind, said that public speaking was something that once terrified her. Since joining the club in 2009, Emer said her confidence has greatly increased.
‘Toastmasters has done an awful lot for me and can do so much for so many people,’ she said. ‘When you are visually impaired, your spatial awareness is affected. If you get up to make a speech, you aren’t sure where the audience is, whether your movements or gestures are ok, whether you are doing anything wrong or whether you are facing the audience. The thing about Toastmasters is, when you are finished your speech, somebody evaluates it. People will offer you constructive criticism.’
‘It’s marvellous and has helped me enormously. I’m now much more confident standing in front of people. I’ve done ten speeches so far and an advanced manual.’
Though she reads braille,’ Emer tries not to use it when making her speeches.
‘If you don’t use notes, then you have a fluidity when you are speaking,’ she said.
She does bring one thing with her when making her speeches however: her guide dog Trudy.
‘I always have Trudy there beside me. She’s really well-behaved,’ she said.
With the Wexford Toastmasters Open Night coming up in Greenacres this Thursday night, Emer is looking forward to meeting potential members. She urges anyone with an interest to come along and discover what the group has to offer.
‘I found it all so nervewracking at first. For me, it was mainly because I didn’t know where the audience was. But you find ways around these worries,’ she said. ‘If I can do that, anyone can!’
(First published in the Wexford People newspaper: print edition. Also available online at: http://www.wexfordpeople.ie/news/clonard-native-emer-mulhall-makes-a-toast-to-the-year-ahead-as-wexford-toastmasters-president-35137560.html)
The rate of burglaries, theft and criminal damage in Wexford have gone down while possession, sale and cultivation of drugs are on the rise according to new crime figures for the county.
The figures, which were announced at the recent Joint Policing Committee Meeting, include all incidents recorded in Wexford from January 1 until September 5 of this year.
Possession of drugs for personal consumption saw a 60 per cent jump compared to the same period last year, rising from 118 in 2015 to 189. Possession for sale and supply also rose by 40 per cent, with 37 recorded incidents last year compared to 52 this year. Meanwhile, cultivation of drugs saw a 275 per cent increase, with 15 recorded cases this year compared to three in 2015.
Property crime reduced by 31 per cent compared to this time last year, dropping from 1874 to 1292. Burglaries dropped by 53 per cent, from 702 to 330.
Chief Superintendent John Roche welcomed the 22 per cent reduction in car theft, saying that this is a crime that usually spikes during the summer months. The figures show 147 cases this year, compared to 189 last year.
Meanwhile, shop theft dropped by one per cent, from 335 cases to 331. Other incidents of theft dropped by 31 per cent, from 507 to 356. Criminal damage saw a reduction of 20 per cent, with figures showing 445 incidents this year compared to 555 last year.
Public order offences have increased by 11 per cent, with 359 cases this year compared to 325 in the same period last year. Supt Roche said that this may be down to an improvement in the economy and subsequent increase in the number of people out socialising. Crimes against the person fell by 2 per cent, from 298 to 289 this year.
Figures for road traffic crimes showed incidents that have occurred between January and July. During this period, there were two fatalities on Wexford roads compared to three in the same period last year. Mobile phone usage while driving has increased by 2 per cent, from 631 to 652. The number of people caught not wearing a seatbelt has increased by 17 per cent, with 347 cases this year compared to 296 in the same period in 2015. Intercepted speeding incidents have risen by 42 per cent from 672 to 471, while non-intercepted speeding crimes dropped by 28 per cent from 3430 last year compared with 2421.
Supt Roche said that he was glad to report the overall fall in crime. He credited their anti-crime initiative for the reduction, saying that it incorporates four pillars to tackle crime.
‘The divisional crime task force have done intensive work with ten hour shifts and analysed when burglaries were happening. We have rotated them every few months,’ he explained, saying that the biggest reduction in these crimes has been seen in Gorey and Riverchapel.
Supt Roche said that the second pillar involved reducing the fear of crime in communities.
‘There is a perception that crime is increasing but the figures tell a different story.’
Making roads difficult for criminals to use is another of the pillars, and Supt Roche said that the Gardaí know every make, colour and reg of criminals in the county. He said that, with the majority of criminals not taxing and insuring their car, the Gardaí are able to seize an average of 50 cars a month under the Road Traffic Act.
Drug enforcement is the fourth area that Supt Roche said they are working on.
Cllr Ger Carthy welcomed the reduction in crime but asked whether the reduction was due to the fact that some criminals here in prison or because of an increase in policing in the county. Supt Roche said that it is a combination of both.
‘We work closely with the judicial system,’ he added. ‘We rely heavily on the curfew system with the help of judiciaries.’
(First published in the Gorey Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/goreyguardian/news/new-figures-show-an-overall-drop-in-crime-in-wexford-but-drugs-are-still-on-the-rise-35042985.html)