Saturday 14 December 2019

Price offer on medication will give hope for CF sufferers

Mary Harney. Photo: Steve Humphreys
Mary Harney. Photo: Steve Humphreys
Eilish O'Regan

Eilish O'Regan

Fresh price proposals for the expensive cystic fibrosis drugs Orkambi and Kalydeco have been made to the HSE by the pharmaceutical company Vertex, it was confirmed yesterday.

Around 550 people in Ireland with cystic fibrosis are desperate to try the newest "miracle drug" Orkambi, which targets the underlying cause of the disease - but the original price of €159,900 per patient was deemed too expensive by the HSE.

A spokeswoman for Vertex said it met with the HSE and presented a proposal that recognises "the unique situation in Ireland as well as the importance of our continued significant investment in new medicines".

The company has declined to divulge the new offer on the grounds of commerical confidentiality.

Separately, it made a new proposal on a price for the drug Kalydeco to extend it to around 18 children aged two to five years old.

The HSE's drugs committee is currently examining the offers and will decide what recommendation it will make to the executive.

Meanwhile, it has emerged that former Tánaiste and Minister for Health Mary Harney (pictured) has been hired by the international public relations company representing Vertex, which has opened a Dublin office. Hanover Group said its Irish office plans to deliver €2m revenue targets within two years.

Ms Harney, who now has her own website and is available for business advisory services and speaking engagements, retired from politics in 2011.

Lorna Jennings, managing director of Hanover in Dublin, confirmed that Ms Harney has been appointed to its board as a "senior advisor." She said: "We are delighted to have Mary on board as a senior advisor. She is going to provide strategic insight, support and advice to myself and to the wider team as we scale and grow."

However, she said that "while Mary will be a valued advisor to the company and its clients, she has had no role or contact in relation to Hanover's work with Vertex."

During her term as minister for health, Ms Harney gave the go-ahead to the screening of all newborns for cystic fibrosis.

The screening was added in July 2011 to the standard heel-prick test which is automatically given to all newborns to check for a range of disorders.

Previously, some babies were being diagnosed late, putting them at increased risk of malnutrition and respiratory distress. Crucially, the earlier diagnosis has also been cited as increasing life expectancy.

Around three babies a week are diagnosed with the disease or identified as a healthy carrier of the altered gene that causes it.

Cystic fibrosis is an inherited condition with an incidence of as high as one in every 1,353 births here. The indications are that the screening is already leading to less hospitalisation of babies.

Irish Independent

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