The Minister for Health, Simon Harris, has said he is pleased to learn that the manufacturers of a cystic fibrosis (CF) drug are willing to re-enter price negotiations with the HSE.

The HSE and Vertex Pharmaceuticals, which makes the drug Orkambi, entered price negotiations earlier this year after the National Centre for Pharacoeconomics (NCPE), which is responsible for assessing medicines to see whether they are cost effective, recommended that the drug should not be funded by the HSE due to its high cost.

It found that at €159,000 per patient per year, Orkambi was unjustifiably expensive.

CF is Ireland's most common life-threatening inherited disease. Around one in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance their child will be born with it. There are around 1,200 people in Ireland with CF and this country has the highest prevalence and the most severe types of the disease in the world.

The condition affects the glands, damaging many organs including the lungs, pancreas, digestive tract and reproductive system, impacting breathing, digestion and reproduction. It causes thick sticky mucus to be produced, blocking the bronchial tubes and preventing the body's natural enzymes from digesting food.

Many people with CF experience exacerbations of the condition, however Orkambi has been shown to reduce exacerbations and hospitalisations by up to 40% in those eligible to take it.

An estimated 500-550 people with CF are eligible to take this drug, which is aimed at those over the age of 12 with a specific genetic mutation. The last few months have proven to be a very anxious time for these people and their families and on December 7, they held a protest outside the Dail to highlight their concerns.

In an open letter to political party leaders, they said that families now fear that ‘they may never receive this drug or its availability may be significantly delayed'.

"We would point out that since 2012, 32 new drugs for cancer have been approved for use in Ireland. This is to be strongly welcomed. However, there have only been two new types of CF drugs made available in Ireland over the past 20 years and Orkambi is one of these drugs and this should also be taken into consideration. In short, new drugs for rarer diseases are rare in themselves," said CF Ireland CEO, Philip Watt and independent CF advocate, Jillian McNulty.

Speaking about this issue after a meeting with EU health ministers in Lisbon on Wednesday, Minister Harris said that he was pleased to learn that ‘Vertex has responded to the HSE with a view to re-engage in negotiations' on the drug.

"I have always said that Vertex need to re-engage in a meaningful way with the HSE that addresses the core issue of price and affordability. In that context the company must return to the table with a significantly better offer.

"This has not happened to date and I again call on the company to re-engage in a meaningful way. However, I was pleased to learn that Vertex has now responded to the HSE with a view to re-engage in negotiations with them on Orkambi," he commented.

He said that in a meeting with some of his EU counterparts, he raised the issue of the ‘unacceptably high price Vertex has put on this drug, making it inaccessible not just for Ireland's CF patients but for other patients around Europe'.

"I intend to continue to intensify my engagement with colleagues in Europe and indeed other countries on this issue. I want to see CF patients receive access to the best treatments possible. That remains my priority," he added.