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Saturday 10 June 2023 Dublin: 16°C
Sasko Lazarov/Photocall Ireland
# Cystic Fibrosis
Negotiations underway over new CF drug deemed 'too expensive'
Irish health authorities will negotiate the price of a “groundbreaking” new treatment for cystic fibrosis, which would currently cost the State more than €28 million annually.

THE GOVERNMENT HAS been advised not to purchase a ‘groundbreaking’ new drug to treat cystic fibrosis, after a national assessment deemed the treatment too expensive.

The National Centre for Pharmaeconomics at St James’s Hospital said the newly-developed drug Kalydeco - or Ivacaftor, as it is also known – was too expensive at the current cost of €234,804 per patient per annum.

It outlined that, at the current cost, the purchase of the drug would pose a “significant budget impact” to the State, at a cost of over €28 million each year – or 40 per cent of the funding available for all new drug treatments.

The report suggests that the manufacturer of the drug, Vertex Pharmaceuticals, should reduce the price. It also recommended the company and the Government engage in a risk-sharing scheme whereby the State does not pay for a treatment that is shown to be ineffective.

Kalydeco was approved by European regulators in July 2012 and submitted for consideration by the Irish Government in August.

Kalydeco has been hailed as a breakthrough treatment for those suffering from a particular form of cystic fibrosis known as G551D - or the ‘Celtic gene’. An estimated 1,100 people in Europe have the G551D mutation, with about 100 of those living in Ireland. The drug has been shown to improve the breathing of G551D sufferers, as well as helping them to gain weight.

Philip Watt, CEO of the Cystic Fibrosis Association of Ireland (CFAI), told that he was not surprised by today’s news. “It’s what we predicted,” he said. “The HSE is now going to negotiate the price, which is standard procedure for drugs of this type”.

Watts urged the HSE and Department of Health to secure a “fair price” for the drug, which he described as a “game changer” for those living with G551D.

“The bottom line is, our patients need this drug as soon as possible,” he said.

Watt noted that the CFAI had flagged the cost of the drug following its approval by European regulators and had expected negotiations over price, but pointed out a number of factors which had led to the current pricing: as well as the cost of research and development of the groundbreaking treatment, the manufacturer could only expect a relatively low return from Irish distribution due to small numbers of patients in the country, he explained.

There are 1200 CF patients in Ireland – which is the equivalent of 4 per cent of the worldwide CF population – and, of those, 10 per cent would benefit from the treatment, Watt said.

However, those who treated with the new drug have benefited “enormously” and, as such, Kalydeco pointed towards a brighter future for research into CF treatments, he added.

Read: Pressure on Health Minister to approve and supply new cystic fibrosis drug
Read: New drug for cystic fibrosis approved by European regulators

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