Tag Archives: Orkambi

Screen Shot 2017-04-12 at 14.12.00

This afternoon.

On the banks of the Grand Canal, Dublin.

Jillian McNulty, who has Cystic Fibrosis, holds a packet of Orkambi tablets.

It follows the announcement by Health Minister Simon Harris in the Dáil yesterday that an agreement has been reached between the HSE and Vertex Pharmaceuticals and that the CF drugs Orkambi and Kalydeco will be made available in Ireland.

Leah Farrell, of Rollingnews, writes:

Cystic Fibrosis Ireland’s 65 Roses Day appeal takes place tomorrow. Members of the public can lead there support by buying a purple rose from volunteers for €2, donating online at here or by completing a fundraising 65 roses challenge. The funding appeal aims to raise €100,000 for CF services and takes place as part of CF National Awareness Week this week.

Cystic Fibrosis Ireland

Previously: Seeing Orkambi

Leah Farrell/Rollingnews

C51fwMiXQAAz9kW C51jTtFXEAAiB1S C51fyrIXMAEO5wc

Earlier today.

Outside Leinster House.

Members of Cystic Fibrosis Ireland, people with CF, and their supporters, held a protest calling on the Government to urgently approve CF drugs Orkambi and Kalydeco.

Meanwhile…

Inside the Dáil…

During Leaders’ Questions, in response to a question from Fianna Fáil leader Micheál Martin, Taoiseach Enda Kenny said:

The Minister for Health, Deputy Simon Harris, met personnel dealing with cystic fibrosis during the week. Deputy Martin is accurate when he states that Orkambi is a drug that impacts on the quality of life of a patient with cystic fibrosis, but it is not the Minister who determines the value of that quality of life or how it is measured. In this case, it was done by Professor Barry, who has commented on this issue in the past.

The Minister for Health has had to shift the emphasis to major pharmaceutical companies so that there is an understanding that there is a limit to how far one can go in getting the balance between having that quality of life for cystic fibrosis sufferers and having the taxpayer pay the exorbitant amounts of money being demanded in respect of the drug.

It is true that Vertex [pharmaceutical company] has made an offer. However, the Minister is trying to bring about a situation where we are not going from year to year uncertain about what the future holds for any category of patients. In this case, it is cystic fibrosis sufferers. That is why the Minister wants to do a deal with the companies in respect of Orkambi, Kalydeco and any other future drug that may be beneficial to the quality of life of cystic fibrosis sufferers.

He is right in that regard because we do not want a situation where Orkambi, for instance, is being made available to patients at a certain price based on the improvement in their quality of life and find that the situation changes six months or 12 months down the line.

The Minister is putting together a future certainty for cystic fibrosis sufferers to deal with a pipeline of drugs, be those drugs Orkambi, Kalydeco or new drugs that come on the scene, which happens every year. I expect that the Minister will be able to conclude his deliberations inside a couple of weeks and bring about certainty for all the cystic fibrosis patients in the country of whom we have many of them, and more than most other countries.

This will give a certainty to those cystic fibrosis sufferers, whether it is in terms of Orkambi, Kalydeco or new pipeline drugs that may come on the market to treat cystic fibrosis. It is a good thing to do and the right way to go and I hope that, when it is reached, the decision will provide certainty for those with cystic fibrosis in the country.

Transcript: Oireachtas.ie

Related: Taoiseach expects deal on CF drug Orkambi in coming weeks (Irish Times)

Pics: CF Ireland