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

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