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Hundreds of protesters send message to Taoiseach on Orkambi issue

By December 7, 2016 No Comments

Hundreds of people took part in a protest on Wednesday, December 7, demanding access to the drug Orkambi.
The Minister for Health, Simon Harris, has been trying to make plans to join with other countries to seek a price reduction for Orkambi. However, will the manufacturer of the cystic fibrosis drug has claimed that this could take years.
Although the company, Vertex, has written to Mr Harris seeking his intervention in negotiations, the Minister has said that the HSE must negotiate the reimbursement of drugs.
The HSE refused the €159,000 per patient fee that was initially put forward by Vertex, explaining that this would lead to an overall cost of €400 million a year.
Cystic Fibrosis patients and sympathisers alike turned out in their droves, holding placards with captions such as: “We need Orkambi, our lives depend on Orkambi”, “We want Orkambi for Christmas”, “People with CF don’t have time”, and “Don’t take my breath away”. The crowd chanted, demanding that Enda Kenny come out to face the crowd. The Taoiseach did not make an appearance at the protest.
As Gerry Adams, was leaving the Dáil, he addressed the crowd, saying: “I raised concern about the lack of transparency on these negotiations today. It’s very important you keep the pressure on”. He concluded by expressing his support for the crowd’s efforts.
The event was organised by Jillian McNulty, who was in receipt of the drug during a clinical trial, stated: “This is the first of many protests. If we do not have a response in January, there will be another protest. We will get Orkambi- and these tears will be tears of joy. We will be a pain in your head, Enda Kenny, until Orkambi is made available to everybody”.

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