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Cystic Fibrosis patients being 'used as pawns' in Orkambi medication negotiations

The drugs are currently too expensive for the HSE to make available to patients.

7/12/2016 Orkambi Tablets Protests Aisling Golden whose sister Gráinne died this year weeps whilst joining Orkambi protesters outside Leinster House in Dublin. Source: Sam Boal/RollingNews.ie

HEALTH MINISTER SIMON Harris has said it is unacceptable that Cystic Fibrosis (CF) patients are being used as pawns by pharmaceutical companies in a bid to extract as much money as possible.

Addressing the Seanad this afternoon, Harris said that the HSE is back in talks with pharma firm Vertex over obtaining the CF drug Orkambi for patients.

Hundreds of people attended a protest outside Leinster House earlier this week calling for action on the drug.

The protest was organised by Jillian McNulty, a Longford woman who suffers from cystic fibrosis.

‘Unacceptable’

Today, Harris told the upper house that the HSE is doing all it can to get the drug to Irish CF patients but he warned that they would not be overcharged for it.

Orkambi has been proven to relieve the symptoms of CF patients who have a specific gene mutation. Ireland has the highest rate of CF worldwide. It is a disease which causes difficulty breathing and coughing up mucus as a result of frequent lung infections.

While saying he wasn’t attacking pharmaceutical, Harris added: “It is unacceptable that CF patients should be used as pawns in a process like this and very regrettable that so many of them and their families have been put through such a harrowing time.

“The company in this case has refused, from the outset, to put a fair and reasonable price on its treatment, in line with the price guidance provided by Professor Michael Barry and his team in the National Centre for Pharmaeconomics (NCPE).

07/12/2016. CF Suffers protest for Orkambi tablet CF Sufferer Sophie Walsh from Dublin joined protesters outside Leinster House in Dublin Source: Sam Boal/RollingNews.ie

“It has refused to give absolute certainty to patients on managed access schemes or programmes that they will continue to receive their treatment for the rest of their lives, regardless of the outcome of its commercial negotiations with the HSE.

“And it has actively sought to place Irish CF patients in the centre of its commercial negotiations with the HSE, with a view to maximising the return for its executives and shareholders.”

A minute’s silence was held at the protest earlier this week to remember those who have died from CF, and people were invited to hold purple balloons and purple roses to show their solidarity for those with the condition.

A statement from those protesting said: “Letters appealing to the Taoiseach, Minister for Health and opposition party leaders will be handed over by representatives of the cystic fibrosis community urging a speedy conclusion to negotiations with the makers of the therapy, Vertex Pharmaceuticals.”

Harris said the NCPE had carried out a detailed examination of the cost-effectiveness of the drug. They came to a figure of €30,000 per patient, which they would consider acceptable. This would cost the Exchequer €75 million over five years making it the sixth most expensive drug in the State.

7/12/2016 Orkambi Tablets Protests Micheál Martin on a loudspeaker joined protesters outside Leinster House. Source: Sam Boal/RollingNews.ie

However, Vertex Pharmaceuticals are looking for “many multiples of these figures”, according to Harris.

The Health Minister said he will continue to engage with the firm but, as things stand, the drug would not be supplied by the HSE.

A statement from Vertex Pharmaceuticals today said they will continue to liaise with the HSE and Government. They also claim to have made significant reductions in the price of the drug.

A spokesman said: “Coming to an agreement will also require feedback from the HSE on the proposals Vertex has put forth to date, as well as clarity around the HSE’s evaluation criteria. These proposals have included significant price reductions, guarantees of budget certainty, novel access schemes such as a risk-sharing agreement, and ways to reduce the timelines on reimbursement decisions for patients in the future as new medicines become available.

“Vertex is acutely aware of the anxiety and disappointment this lengthy process is causing and is committed to a speedy resolution.”

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