Tuesday 23 January 2018

New fears over CF drug costs after €133,000 German deal

Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.
Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.
Eilish O'Regan

Eilish O'Regan

New questions have arisen over the affordability of the cystic fibrosis drug Orkambi after it emerged the cost per patient for a year's supply under its most recent deal comes to around €133,000.

The cost of the German deal, which was finalised last month but only made public in January, is being closely watched by Irish cystic fibrosis patients who have been campaigning to have the drug made available here.

Already the HSE has turned down a price of around €159,000 per patient annually and a new offer has since been made by the drug makers Vertex.

In addition to Germany, Orkambi is now available to eligible people with cystic fibrosis in the United States, Austria, and France.

The most recent meeting between Vertex and the HSE took place in early January and a new confidential offer is currently being assessed.

Read more: 'I’m angry, my country has let me down' - Mother forced to live in shed in wait for lifesaving drug for daughter

A spokeswoman for Vertex said it presented a proposal "that recognises the unique situation in Ireland".

It also took account of the continued significant investment needed in new medicines for those people with cystic fibrosis.

Asked for an update on the talks yesterday, the Vertex spokeswoman said: "We have not yet heard back from the HSE - we understand that the proposal is following its process.

"We have contacted the HSE to request reassurance that due and prompt consideration is being given to our proposal and hope to hear from them soon regarding next steps.

"Thousands of people living with cystic fibrosis in other countries have access to these important new medicines and Ireland should not be an exception.

"In the last six months, Vertex has offered multiple proposals to provide access to Orkambi for all eligible patients in Ireland."

These included options comparable to those found acceptable in other countries such as Germany and Austria, she said.

The latest proposal to the HSE - which was developed with input and direction from the HSE - would provide access to Orkambi and wide availability of another drug Kalydeco, she said.

The HSE said that following completion of the assessment process its drugs committee will make a recommendation on the cost-effectiveness of Orkambi to the HSE Directorate.

It will make the decision on availability, taking into consideration the manufacturer's latest price offer.

Vertex said each day matters to a person with cystic fibrosis and the need is urgent.

Irish Independent

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