Philip Watt

Philip Watt

  • Cystic Fibrosis Ireland met with Minister for Health Leo Varadkar and senior officials for the Department of Health on Monday 25th January 2016.

     A delegation from Cystic Fibrosis Ireland and a member of our Medical and Scientific Council (clinician) and a patient with CF met with Minister Leo Varadkar on Monday 25th January 2016.

    The meeting was wide ranging but with most focus on:

    1. Access to new and innovative therapies for people with CF (in particular Orkambi);
    2. Concerns about chronic staffing shortages in CF centres; 
    3. The need for progress in relation to Beaumont Hospital (adult in patient rooms- 20 needed only 6 available) and Cork University Hospital (paediatric inpatient and outpatient facilities);
    4. Transplant issues (including pre and post- transplant rooms and the introduction of soft opt out organ donation).

    CFI is also seeking return of €800,000 we have paid to the government in VAT arising from huge fundraising efforts to improve 7 CF Hospital centres around the country. This would be reinvested in vital CF services, including for example Beaumont Hospital and Cork University Hospital, if returned to CFI.

    A detailed briefing paper was drawn up by Cystic Fibrosis Ireland for the meeting.

     

    The main outcomes of the meeting were as follows:

    • The Minister and his officials received first-hand information about the impact of Orkambi, including the dramatic reduction in exacerbations/hospitalisations resulting from the drug (40% decrease).
    • A petition signed by over 40,000 people supporting access to Orkambi was handed to the Minister demonstrating how strongly patients and the public feel about ensuring CF patients have access to Orkambi.
    • There was powerful testimony at the meeting from a patient with CF (Jillian McNulty) who has benefited from being on Orkambi as part of the clinical trials and who has remained on the drug since the trials. She has experienced a dramatic reduction in hospitalisations and a general improvement in well-being. This is also reflected in other patient testimonies CFI has received.
    • CFI pointed out that Orkambi is expensive because of the huge costs of developing this drug and the relatively few patients (worldwide) from whom the pharma company can seek to recoup their costs and to invest in further research. CFI supports the government in getting the fairest price for Orkambi.
    • There will be very significant savings to the government arising from the dramatic decrease in hospitalisations arising from those on this drug.
    • The Minister told CFI that if Orkambi was positively assessed by the National Centre for Pharma Economics/HSE, additional funding from government, on top of the present health budget, would be sought. (Thus this drug will not impact on other health services- CFI).
    • The Minister and his officials promised that Orkambi would be assessed fairly and as efficiently as possible and they are awaiting further documentation from the drugs company who have produced Orkambi.

    Other outcomes.

    • The Minister promised that an audit of staffing levels in CF centres would be undertaken as part of the National Clinical Programme and would be completed shortly. The outcomes would then be considered by government.
    • The Minister said that ‘soft opt out organ’ donation would in included in the Fine Gael Manifesto and (if elected) in the next programme for government
    • The Minister said he was concerned about the high level of VAT tax paid by CF for hospital buildings and this issue would be further investigated. He knew from experience it also affected other charities. 
  • Cystic Fibrosis Ireland met with 53 TD’s from around the country on Tuesday 22nd March in Buswells Hotel, Dublin. Philip Watt CEO of CFI said ‘we spoke individually to 53 TDs on the need for cross party support for the funding of Orkambi in Ireland. CFI also highlighted some CF centres are 20 staff short of what they should have according to European Standards (Cork University Hospital adult CF services for example). CFI also highlighted the need for an incoming government to change the organ donor from opt in to soft opt out and the need for 20 inpatient rooms in Beaumont Hospital (there are only 7 at present). We received a very positive response from TDs, representing all the main parties and groupings.

    In separate news, the body in England and Wales that decides on new drugs (NICE) has issued a draft guidance turning down Orkambi. The final decision on Orkambi will be made by NICE at the end of April. In a positive note, NICE has recognised the positive clinical benefits of Orkambi, the main stumbling block appears to be price. The CF Trust in the UK has called for negotiations on price to make this important drug accessible as soon as possible.

    NICE stands for The National Institute for Health and Care Excellence. It is an independent organisation, set up by the British Government in 1999. NICE decides which drugs and treatments are available on the NHS in England and in some cases for Wales.Scotland and Northern Irelandhave separate organisations to make decisions.

    The meeting with TDs was part of the launch of our awareness week, 8-15th April 2016.

  • Message from Philip Watt, CEO Cystic Fibrosis

    "I am pleased to let you know that the Minister for Health has announced his intention (see press release below) to publically fund fertility treatment (in conjunction with planned legislation). This is something that CFI has fought for some time. We will of course be working to ensure that people with CF will be included as an eligible group in the new legislation.

    As you know, health legislation is notoriously slow to be enacted, so CFI will seek to work with other patient groups to ensure this issue is a priority for the new government, irrespective of who is elected.

    CFI has a fertility treatment budget, but demand has always exceeded our budget, so this will be welcome news to many of our members, as long as the legislation is enacted quickly and our members are eligible. We will seek to ensure it is in the new programme for government."

     

     

    Press Release

    Minister for Health Announces his intention to Fund Fertility Treatment in conjunction with planned Legislation
    1.2.2016

    Minister for Health, Leo Varadkar, has announced his intention to provide public funding for assisted human reproductive treatment in conjunction with the planned introduction of legislation in this area.

    “I believe it is important that we should consider how best to provide public funding for fertility treatment in tandem with closing the current legislative gap in this area of healthcare. Fertility treatments should be funded in such a way that not only maximises efficiency but which ensures equity of access as well,” Minister Varadkar said. “Nevertheless, the provision of public funding for assisted human reproduction must be accompanied by a robust system of legal governance which will promote and protect the health and wellbeing of patients and most especially the children who will be born as a result of the treatment.”

    In February 2015, the Government gave approval to draft a General Scheme of legislative provisions dealing with a broad range of aspects relating to assisted human reproduction. Drafting is underway and the General Scheme will be published in the first half of 2016.

    The Department of Health is commissioning an evidence review of international public funding models. The review will inform policy regarding the optimal mechanism for any future public funding of assisted human reproduction in the State.

    The ability to conceive a child naturally is a normal human expectation and a diagnosis of infertility can be a source of emotional distress, physical discomfort and financial hardship. While fertility treatment is not provided in the Irish public health service, financial support is available to individuals. For example, tax relief for medical expenses and the cost of certain approved fertility medicines are covered under the Medical Card or Drugs Payment Scheme.

     

  • New €1.4m Cystic Fibrosis day care centre in Mayo University Hospital is officially opened by An Taoiseach Enda Kenny TD

    A new €1.4m day care centre for patients with Cystic Fibrosis (CF) was officially opened by An Taoiseach, Enda Kenny TD, today, Friday 15th January at Mayo University Hospital. The new centre will, for the first time, provide dedicated facilities for all of the regular out-patient and day care needs of children and young people with CF in the greater Mayo area.

    The CF day care centre was built through a partnership between the Mayo University Hospital/HSE and charitable funding and other support provided by Cystic Fibrosis Ireland (the national CF patient group) and CF West (a regionally based CF hospital build fund).

    Commenting An Taoiseach Enda Kenny TD said, “It is just over two years ago that I was given the honour of turning the first sod on the site of the new Day Care Centre and Outpatient facility for people with Cystic Fibrosis in Mayo University Hospital. I am delighted to be returning to officially open the new facility in Castlebar. Everybody involved with this project can be immensely proud of their achievement. Cystic Fibrosis is the most common genetically inherited disease in Ireland and the need for such a facility is well recognised. Despite our small size, we have the highest proportion of people anywhere living with this condition. That is why the completion of this facility is such a significant milestone for improving health care services in the West.

    Mayo University Hospital has been delivering an excellent level of service for Cystic Fibrosis patients for a number of years and the clinic here has an outstanding and devoted medical staff. But there has long been a need to develop a specialised Cystic Fibrosis facility in this region and now, thankfully, this unit can begin to deliver for patients attending Mayo University Hospital. Cystic Fibrosis patients can have routine procedures carried out in a place ideally suited to their needs.

    I would like to take this opportunity to pay a special tribute to the fundraising efforts co-ordinated by Cystic Fibrosis West, working with the Mayo branch of Cystic Fibrosis Ireland.
    Cystic Fibrosis Ireland their staff and, most of importantly, the volunteers, giving of their time and energy, has made a hugely significant contribution towards improving the lives of those suffering from this disease. This unit represents the gold standard in terms of the care environment for Cystic Fibrosis patients.

    It is also representative of the improvements here in Mayo University Hospital over the last number of years. Only last month we officially opened the Mayo Medical Academy and this comes on top of other investments like the renal dialysis unit here in Castlebar. I will continue to work to keep the recovery going. A better economy and more jobs across Ireland mean we can invest in vital public services like the fantastic facilities at Mayo University Hospital.”

    Charlie Meehan, General Manager at Mayo University Hospital added, “This is a significant development for CF services in the greater Mayo area. The Cystic Fibrosis team at Mayo University Hospital are first-class and this new facility will enable them to continue to deliver high quality care in state of the art clinical facilities. I would like to acknowledge the significant support provided by Cystic Fibrosis Ireland and CF West for the development of this centre."

    Commenting, Dr Michael O Neill, Consultant Paediatrician and lead of the CF team at Mayo University Hospital said, “This new centre will increase the life expectancy and improve the quality of life of the many CF patients in Mayo. It provides two specialist patient areas, treatment facilities, education laboratory, conference and support facilities all integrated into the main hospital’s infrastructure”.

    Philip Watt CEO of Cystic Fibrosis Ireland stated, “This new daycare centre in Mayo University Hospital offers a beacon of hope for children and young people with Cystic Fibrosis in the northwest region. The project will mean that for the first time there will be a stand-alone centre for treating people with CF in Mayo General Hospital built to international standards, including specially designed air filtrated consulting rooms for regular patient assessments.

    I would like to thank those who contributed to key stages of this project in particular the huge contribution of CF West and the Mayo Branch of CF Ireland; the Board and patient advocates in CF Ireland and to the great support from the Management and CF clinical team in Mayo University Hospital. This project has benefitted in many important ways from the support and commitment of An Taoiseach Enda Kenny TD and we thank him and the government.”

    Martina Jennings Chairperson of the Mayo Branch of CF Ireland and Chairperson of the CF West stated, “The new CF day care centre was the brainchild of CF West and Cystic Fibrosis Ireland and would not have been possible without the fantastic generosity of the local community in Mayo, together with support from many other parts of Ireland. People responded time and time again to our many calls for support. We cannot thank the public enough for their kindness, particularly in a time of recession when it became clear that this centre would not have been built solely from public finances. Those who supported this fantastic new centre can now see how they have made a real difference to the care of children and young people with CF. On behalf of the Mayo branch of CF Ireland and CF West we say many, many thanks to all those who supported us along the way”.

    The new centre includes consulting rooms with a state of the art air filtration system that will significantly reduce the risk of cross infection, which is a major challenge in all CF centres. The total project cost was €1.4million of which €800,000 was provided by CF West /Cystic Fibrosis Ireland and €600,000 was provided by the HSE/Mayo University Hospital and the National Lottery.

    Contacts:
    Philip Watt - 087 6370557
    Caitriona Meehan - 086 6069749

  • Open Letter to Political Party Leaders from CFI and Jillian McNulty (advocate)

    An open letter to party leaders will be handed in during the protest outside the Oireachtas on Wednesday 7th December 1.30-2.30pm in Kildare Street.

    The letter is from CFI (CEO Philip Watt) and Jillian McNulty, person with CF an independent advocate who has benefitted from the ground breaking drug Orkambi.

    You can download the letter here or read it below.

     


     

    Dear Party Leader,

    We are writing to you to ask your support to ensure that meaningful and substantive discussions on the reimbursement of the ground-breaking drug Orkambi are continued by the Health Service Executive (HSE) and the pharmaceutical company Vertex.

    We would further urge that negotiations commence and are concluded positively and swiftly on the reimbursement of Kalydeco for 2-5 year olds, which impacts on about 18 children in Ireland.

    As representatives of patients we feel very much caught in the middle of the current stand-off between the HSE and Vertex Pharmaceuticals on a price for Orkambi.

    There continues to be a high level of anxiety among the families of the 500 plus CF patients who stand to benefit from Orkambi – the first to treat the underlying cause of CF in this group of patients. Families have expressed dismay to us that they fear they may never receive this drug or its availability may be significantly delayed.

    We continue to urge Vertex to reduce the price of Orkambi and enter into an affordable shared-risk agreement with the HSE. We make clear again we do not support the excessive payments to senior staff in any international pharmaceutical companies, including but not confined to Vertex

    We continue to urge the HSE to give a more complete and less selective analysis of the impact of Orkambi. In particular the HSE should explicitly recognise the importance of a 40% reduction in hospitalisations and the outcomes of long studies published in October 2016 that demonstrate how Orkambi slows the progression of CF, including the decline in lung function. It is a matter of concern that the HSE have not done so to date.

    The role of exacerbations (worsening of CF leading to hospitalisations) in progressing CF from which 25% of patients do not recover their baseline lung function, has been widely recognised in CF research. 

    We fully support the Minister for Health in his quest for international support to improve Ireland’s bargaining position on expensive drugs but we are concerned this may not result in short/medium term breakthroughs in relation to access to Orkambi for Irish patients. Orkambi is too important to be delayed.

    We re-state our belief that the Minister and this government and opposition parties are compassionate and sincere about CF but we would also call for efforts to be redoubled to find a way past this present impasse.

    We would point out that since 2012, 32 new drugs for cancer have been approved for use in Ireland. This is to be strongly welcomed. However there have only been two new types of Cystic Fibrosis drugs made available in Ireland over the past 20 years and Orkambi is one of these drugs and this should also be taken into consideration. In short, new drugs for rarer diseases are rare in themselves.

    Finally, we would also seek you support the extension of Kalydeco to 2-5 year olds in Ireland. We understand negotiations on this are about to commence. We would urge that a decision is taken swiftly as Kalydeco is already available to 6 year olds and over in Ireland.

    Note: This extension is already available to patients in England, Scotland, Germany, Wales, Netherlands, Belgium and the US. There are 18 children who would stand to benefit from this extension in Ireland.

    Yours sincerely,

    Philip Watt, CEO CFI and Jillian McNulty, Independent CF Advocate

     

     

     

  •  

    Cystic Fibrosis Ireland welcomes progress on new children’s hospital

    Philip Watt, CEO of Cystic Fibrosis Ireland stated 

    'Cystic Fibrosis Ireland warmly welcomes the recent progress in developing a new children's hospital on the St James' Hospital campus in Dublin. One of the key ambitions of the new hospital is to provide a state of the art centre for children with Cystic Fibrosis that will replace the CF services currently provided in three hospitals- Tallaght, Crumlin and Temple Street Hospitals. Such a centre, when completed, will make a huge difference to children with CF in the greater Dublin area and beyond. We look forward to the opening of this badly needed new centre and we acknowledge the on-going efforts to consult with Cystic Fibrosis Ireland by Eilish Hardiman, CEO of the Children’s Hospital group and her team'

    Philip Watt further stated that 'in focussing on services in Dublin it is important not to forget about paediatric services in other parts of the country, for example a new state of the art paediatric centre has long been promised in Cork University Hospital that will improve services to all children, including those with CF. This should also be seen as a national priority of equal merit'

    10 August 2015