Several hundred protest at Dáil for cystic fibrosis drug – Gerry Adams presses Taoiseach at Leaders’ Questions

» John Hedges

An Phoblacht Editor

‘I ask the Taoiseach to give a commitment to families who are candidates for the drug that they will receive it while negotiations are ongoing, even on a trial basis’

SEVERAL HUNDRED PEOPLE gathered at the Dáil at Wednesday lunchtime to demand that the Government acts to provide access to the Orkambi drug for cystic fibrosis patients.

The state’s medicines watchdog, the National Centre for Pharmacoeconomics, says that Orkambi is too expensive at the price demanded by maker Vertex Pharmaceuticals at €159,000 per patient annually.

Speakers who need the drug challenged Taoiseach Enda Kenny to come out and face them and tell them “face to face we’re not worth it”.

Earlier, Gerry Adams pressed the Taoiseach in the Dáil during Leaders’ Questions to pursue all options to ensure access to the Orkambi drug for CF patients.

He also called on the Fine Gael leader to give a commitment to patients who are candidates for the drug that they will receive it while negotiations with the manufacturer are ongoing.

Teachta Adams said:

“Ireland has the highest number of people suffering from cystic fibrosis in the world and the largest proportion of families with more than one child suffering from the condition.

“According to Cystic Fibrosis Ireland, it affects around 1,200 adults and children in the state and citizens here suffer with some of the most severe strains of the disease. There are also 455 citizens with cystic fibrosis in the North.”

He said that Oireachtas members have heard in the past two weeks two “emotive and heart-breaking” presentations from people living with cystic fibrosis and their family members.

“We have heard from parents who have buried their children, and patients who manage gruelling daily medical regimes and who endure recurrent hospitalisation,” the Sinn Féin leader said.

“Many of them are valiantly battling for the opportunity to access the potentially life-changing drug Orkambi. Only 40 citizens have been able to secure Orkambi on a trial basis.”

Gerry Adams said he has asked Health Minister Simon Harris “numerous questions” about where the negotiations on Orkambi and other drugs are “but we are none the wiser”.

He said that families have asked six times to meet with the Health Minister “and I would ask the Taoiseach to ask him to meet them as a priority”. 

The Louth TD said that some of the families were told recently by Vertex that the company was open to a risk-sharing model of payment among other payment schemes “so I would urge the Taoiseach to confirm if all options have been pursued with Vertex”. 

Gerry Adams said that the Minister for Health in the North, Sinn Féin MLA Michelle O’Neill, has no direct responsibility in the matter, she has indicated a willingness to work with the Health Minister in the South to assist in the process.

“I urge the Taoiseach to commit to formally approach counterparts in the Assembly and other EU member states as part of a collaborative discussion to secure access to Orkambi.”

He added:

“There is a real urgency about the provision of this drug and I would ask the Taoiseach to consider a proposition of giving a commitment to the families who are candidates for the drug that they will receive it while negotiations are ongoing, even on a trial basis.”