Taoiseach and senior ministers made representations to Reilly over CF drug

HSE group had found cost of Kalydeco was too high to be recommended as treatment

Minister for Health James Reilly

Minister for Health James Reilly


Taoiseach Enda Kenny was one of a number of senior Government figures to write on behalf of Cystic Fibrosis patients to the Minister for Health James Reilly concerning the sanction of the drug, Kalydeco.

Documents released under the Freedom of Information Act show in addition to the Taoiseach, Mr Reilly also received representations from Minister for Education Ruairí Quinn and Minister for Children and Youth Affairs Frances Fitzgerald.

Tánaiste Eamon Gilmore’s office also made a representation to Mr Reilly’s office on behalf of a CF patient.

The documentation shows Minister for Arts, Heritage and the Gaeltacht, Jimmy Deenihan made a representation to Minister Reilly on behalf of the drug maker, Vertex Pharmaceutical.

In his letter to Mr Reilly, Mr Kenny wrote ‘Dear James, I am enclosing correspondence I received from (name redacted) regarding authorisation for the use in Ireland of the drug, Kalydeco as a treatment for cystic fibrosis”.

In the letter dated January 15th 2013 on Office of the Taoiseach notepaper, Mr Kenny wrote: “I would be grateful if you could arrange to have this matter examined and if you could let me know the position.”

On February 1st Mr Reilly gave his approval for Kalydeco for the 120 or so CF patients with the G551D mutation from March 1st last.

In January the HSE National Centre for Pharmacoeconomics (NCPE)had recommended against the approval of the drug at over €234,000 per patient per annum and a budget of €28 million per annum. The Minister for Health approved the drug after negotiations between HSE and Vertex Pharmaceuticals over the price of the drug.

In a letter to Minister Reilly on January 31st, director general designate of the HSE, Tony O’Brien said the cost of Kalydeco over 10 years will be €220 million

The letter by Mr Kenny to Dr Reilly was prompted by a CF patient writing to Mr Kenny to say: “If I got Kalydeco, I would be a much healthier and happier person and not have to endure all the medication and worries and struggles that go with CF.

Vertex country manager for the UK and Ireland, Simon Lem told Minister Deenihan in a letter dated December 12th last that Vertex has concerns over the cost effectiveness threshold used by the NCPE.

He said: “A number of innovative medicines have recently not been recommended for use by the NCPE as a result and Vertex is working to ensure that CF patients are not similarly disadvantaged.”