Open letter to Minister for Health Simon Harris TD

Open letter to Minister for Health, Simon Harris TD

29th November 2016

Dear Minister,

On behalf of Cystic Fibrosis Ireland we would ask to meet with you as soon as possible.

We know from previous contact and your recent letter to us, that you are a compassionate and caring person, and we know your task as Minster for Health is a difficult one, including in respect of approving high cost innovative therapies.

However, there is no disguising the reality that there has been considerable upset within the CF community in Ireland over the last couple of days which has not been helped by how the Orkambi 'decision' has been conveyed to patients. We note that you share some of our concern in this regard. This heartless form of communication to ill patients has since been compounded by the dearth of information that has been provided by the HSE to our patients since the 'decision' was leaked late on Saturday evening to a well-respected journalist.

We note in your letter to CFI that you do not see this as the end of the process. We hope this means there is light at the end of this tunnel. However we remain very unclear to what you mean in practice. We would wish to discuss this further with you.

In the absence of any communication from the HSE to us, we remain concerned that the impact of Orkambi appears to be 'talked down'. We would point out the following:

Why would the HSE negotiate for 25 weeks/6 rounds of negotiations, if the HSE believed that Orkambi was not effective in the first place?

In this context, we are further concerned that there appears to be no public acknowledgement by the HSE of the long term research data that was published on the 28th of October 2016 that confirmed:

  • A 40% decrease in hospitalisations
  • The retardation of the progression of CF for those on Orkambi
  • The reduction in other costs resulting from less hospitalisations and less dependency on other CF drugs

We note that the highly respected Professor Stuart Elborn CBE formerly of Belfast City Hospital and now lead clinician in the lead CF hospital in the UK (Brompton Hospital in London) and Principal Investigator for the clinical trials for Orkambi stated on the 28th October 2016:

"Long-term follow-up data has indicated that this treatment can prevent disease progression.

"Initially, we were able to show that you can make people a bit better. Now we're seeing exciting and reassuring long-term improvement."

"We hope this will lead to a further rethink about the long-term benefits," said Prof Elborn. "There are likely to be reductions in the cost of hospital visits and other treatments."

"I'm really excited by the therapy and also the pipeline of other powerful drugs that could get us closer to a cure."

(Source: 28.10.16 Press Association)


To conclude, we would urge you as Minister to intervene and make Orkambi available for the 550 people who stand to benefit as soon as possible, even if this involves some further negotiations. We would also urge that negotiations for the extension of Kalydeco for 2-5 year olds commences as soon as possible. We will continue to lobby Vertex to significantly lower the cost of this important drug.

Yours sincerely

Philip Watt

CEO Cystic Fibrosis Ireland