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:
- Access to new and innovative therapies for people with CF (in particular Orkambi);
- Concerns about chronic staffing shortages in CF centres;
- 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);
- 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.
- 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.