The programme for Government stated that the Government will drive down the cost of providing new treatment drugs either through national or European initiatives. One of these treatments is Respreeza. It is a therapy which has been proved to slow down the progression of genetic emphysema in patients with severe Alpha-1. Two of the 21 people taking part in a clinical trial of Respreeza died before Christmas when the HSE stopped funding the administration of the therapy.

CSL Behring has agreed to continue to provide the drug free of charge until the new clinical trial begins in June or July 2008. All 19 patients are back on the therapy, which has been administered, as before, by Point of Care. After Marion Kelly's death, the Minister for Health, Deputy Harris, met the family and committed to ensuring the negotiations would restart between CSL Behring and the HSE.

As of today, Alpha One told me it has not yet received an update from the HSE as to when negotiations will start. This is a matter of life and death for many people. Negotiations must resume immediately between the HSE and CSL Behring to agree a mutually acceptable price for the therapy. Administration of Respreeza should not be included in the price of the drug.

Will the Taoiseach give me a commitment today that the HSE and the Government will resume talks with CSL Behring to ensure that this vulnerable group of Alpha-1 sufferers has access to Respreeza?

This morning the Oireachtas Joint Committee on Health published a report on orphan drugs, of which Respreeza is one drug. It is a summary of three meetings which we held on orphan drugs. Orphan drugs are different from other drugs, yet the process of looking at them is the same. They need to be treated differently. The quality process of comparing cost-benefit analysis needs to change. Undoubtedly, legislation will be required to change how orphan drugs are treated. In the meantime, I believe the quality and cost-benefit analysis needs to change for drugs such as Respreeza, Translarna and Kuvan which is forphenylketonuria.

I thank Deputies Michael Collins and Harty for raising this important matter. To fulfil the programme for Government commitment referred to, we have taken two distinctive actions. The Department of Health and the Department of Public Expenditure and Reform led a process on behalf of the State where we reached a new drugs pricing agreement with the Irish Pharmaceutical Healthcare Association, IPHA. It will save the State a fortune in hundreds of millions of euro and it has pretty much stabilised drug prices. We spend €2 billion a year on drugs. Two weeks ago, the Government agreed to formally join the BeNeLuxA Initiative group in terms of working with four other European countries in jointly horizon scanning, sharing information and, possibly, even procuring drugs with them.

Regarding Respreeza, the Deputy is right. I had a useful and informative meeting with the family of the late Marion Kelly. I am grateful to the family members for their time. I have asked that the HSE and the company re-engage and I have been informed that will happen. I intend to meet the Alpha-1 Foundation shortly. I will continue to make the point that the way the company ended the clinical trial without any consideration for its patients was unethical, disgusting and a breach of the Helsinki agreement. The company should re-engage with the HSE and work out a way forward.

Regarding orphan drugs, the Chairman of the health committee is correct. When I spoke at the Irish Pharmaceutical Healthcare Association, IPHA, dinner a few months ago, I announced a process whereby we would work with industry, patient stakeholders and our procurement people on how to put in place a better system for procuring orphan drugs.