Letter to Tony O Brien, Chief Executive HSE

Letter to Tony O Brien, Chief Executive HSE, Re: Orkambi negotiations

Yesterday Philip Watt, CEO of Cystic Fibrosis Ireland sent this letter to Tony O Brien in the HSE regarding the negotiations between the HSE and Vertex. A copy of this letter was also sent to the Minister for Health Simon Harris, John Hennessy, National Director, Primary Care in the HSE and Michael Barry, Director of the National Centre for Pharmacoeconomics.


15 December 2017  

Dear Mr O Brien,

In relation to Orkambi, we greatly welcome the fact that negotiations have recommenced between the HSE and Vertex and we urge both parties to take this important opportunity to negotiate with a view to reaching a compromise that is fair to both parties and most important of all is fair to patients with CF in Ireland.

We would further urge both parties ensure that these negotiations are held in camera and not in public to give the negotiations a real chance of success. We have written to Vertex along similar lines with the hope that a sustainable compromise can be reached.

As the national patient body for patients with CF we are not party to the negotiations but we would offer the following observations arising from recent public discourse

  1. All of the positive benefits of Orkambi need to be considered when assessing the impact of Orkambi. These include the improvements to lung function; the reduction in the rate of exacerbations; improvements in weight and improvements in overall quality of life. CFI recognizes that these impacts will vary from one patient to another because of the nature of CF.

  2. Preventing the inevitable rate of lung function decline needs to be full taken into account. Recent long-term data published at the North American CF conference demonstrates that Orkambi slows this decline by 42% over a 2 year period.

  3. CFI has and will continue to speak out against inequities in the international pharmaceutical industry including the level of CEO salaries, however our patients cannot afford to wait for such major systemic reforms, as their health needs are in more critical and immediate. We note that these inequities are not confined to Vertex.

  4. We note that the Government’s National Plan on Rare Disease recommended the consideration of a new system of assessing orphan drugs (drugs for rare diseases) we would urge that this recommendation 30 is implemented as soon as possible.

Yours Sincerely,

Philip Watt