Mr. Paul Cullen, the health correspondent of The Irish Times, wrote today that more than 20 Irish patients with severe lung disease are facing the removal of a life-changing drug within weeks following its rejection by the Health Service Executive on cost efficiency grounds. The patients who have genetic emphysema are due to see their use of Repreeza provided through a compassionate use programme end in two weeks. Most of them have been on the treatment for up to a decade and fear a rapid deterioration if the drug is no longer available. An application to have the treatment, which costs more than €100,000 per patient but is provided free of charge, has been rejected by the HSE drugs group.

I want to compliment the Alpha One Foundation, which runs a HSE-funded screening programme in Beaumont Hospital in Dublin. It has said that the treatment has been life-changing for patients. I compliment people such as Professor McElvaney and others who have been doing great work for the patients who suffer from this most severe of diseases.

I know about this disease first hand, being a very close friend of a patient who has been suffering with it for many years and who relies on this life-saving drug. Some people have another condition, panniculitis, which is combined with the emphysema problem I have highlighted. If this drug is taken from them, they will slowly fade away.

This Government, the Department of Health, and the Minister, who is sitting beside the Minister, Deputy Bruton, should get on to the drugs companies providing this drug. For God's sake, we are not talking about an unimportant issue. We are talking about a drug that will save people's lives. It is saving their lives. It is keeping them alive. If the drug is taken from them, the immediate effect will be that they will lose the power in their legs, they will not be able to breath and will have to fight for every breath. The money for this drug has to be provided but the drugs companies have to be tackled also.

I ask the Minister for Health in particular to go to them, sit down with them and tell them that for God's sake on compassionate grounds they should reduce the cost so the HSE will be able to continue to provide this lifesaving drug. I know people who are at home today and who have already heard Professor McElvaney and others discussing the drug on Radio 1 this morning. They will also hear it being spoken about here, but what we want to hear from the Minister and the Government is that they will help these people. It is not an huge number of people, but my God their lives are every bit as important as mine or the Minister's any day of the week.

I thank the Deputy for raising the issue. I read the newspaper reports, as did the Deputy. Any drug that improves people's lives is something to be welcomed. I understand the patients have what is described as compassionate access to the drug but the company appears to be suggesting this will be withdrawn from them.

The HSE has a process for deciding what drugs are supplied with the public paying for them. These decisions are made entirely independently of the political process. There is an independent process which I understand is not complete, and whether the drug in question should be supported will go to the HSE's management committee for a decision. It makes its decisions on independent assessment of the impact versus the cost. We have seen previously that companies have been looking for exorbitant costs for some medication. The Minister has taken initiatives with other colleagues in other countries, including the UK, Scotland and Australia, to seek to ensure all health patients on public lists get access to medication on fair terms. This is where the issue rests.

In the same report mentioned by the Deputy, I saw the HSE needs more cost-effective pricing from a company to ensure the drug can be made available to public patients. I appeal to the company to ensure the pricing of such products, which can transform people's lives, is set at a reasonable level so public patients, whether here or in other countries, can gain access to them. The Government has sought to deal with this national issue, but in terms of individual products it is down to the HSE to make that decision. This decision-making process, I understand, is not yet complete.

The Minister knows that in the past a life-saving drug was approved for cystic fibrosis patients. The plight of the patients on Respreeza has attracted far less interest, perhaps because they are older and fewer in number. As well as the approximately 20 patients on the access programme another 40 people with alpha 1 are waiting to receive it should the HSE give approval. I make this plea in the House. This involves the small number of 20 people, but this is how they have been living in recent months: they are only told this month whether they are approved for next month. It is literally like being told, "We are not sure yet whether we will allow you to have a proper quality of life or whether you will start to slowly die". This is an awful thing to have to say about these people, but it is how they are being treated. I beg the Minister for Health to give these people certainty today. Sit down with the drugs companies, call them to order and ask them to have sense. They have a public and moral responsibility to help these poor people. I am not fighting with the Minister, but I am asking him to tackle this work please. Nothing could be more important than saving people's lives and I ask the Minister to do this please.

It is very unfair if the company has given 20 people compassionate access to a life-transforming drug and is seeking to withdraw it from these patients as part of a negotiation to get a better price deal or wider access. This seems to be a very unfair approach by the company. There are responsibilities on the company. If it gives access to a life-transforming product it should sustain it for those people in a pilot programme. Of course there are issues on the wider front, regarding the HSE deciding on the efficacy of the drug and the possibility of extending it to a much wider number of patients.

That has substantial economic cost. The Minister has just negotiated a saving of €650 million for access to new drugs by taking a hardheaded approach to negotiating with companies but these 20 patients should not lose their access to this product so that a negotiation can be concluded on more favourable terms. The approach of Government, to seek international support and put on a united front to get a decent deal for public patients, is the right one.

The Minister has stated something as a fact but he is wrong. It was the HSE drugs group which rejected the application, not the company. The Minister is wrong.

I am not wrong. The HSE and the company are in negotiation about its longer-term use in the wider public service. As I understand it, the company provided 20 patients with compassionate access to this product as a demonstration of its efficacy. I do not believe that should be withdrawn in the process of a discussion about its longer-term use.

The Minister might engage with the Deputy afterwards.