John Brassil (Kerry, Fianna Fail) | Oireachtas source

As the Minister of State, Deputy Catherine Byrne, will be aware there is great anguish and concern about the availability of the drug, Respreeza, for the treatment of Alpha-1 antitrypsin deficiency, which is a genetic lung disorder affecting approximately 350 people in Ireland. The drug Respreeza is suitable for treatment for approximately 40 more patients than the 21 currently in receipt of it on a compassionate ground. As campaigners, we welcome that the company has made the drug available for a further two months, in March and April, but this means that late next month we will be again faced with a deadline set to expire, leaving patients facing the same anguish. This matter must be resolved. We are also concerned to learn that price is not the only reason for the non-reimbursement of Respreeza. It is claimed that Professor Barry from the National Centre of Pharmacoeconomics, the NCPE, believes that Respreeza does not work. Professor Gerry McElvaney has been doing research in the US on Alpha-1 antitrypsin deficiency since the early 1980s. He has continued that research here since then. He is the leading authority here and one of the top experts in Europe on Alpha-1. He has set up a research centre and done all of the work for the clinical trials. He also worked very hard on the purified protein that was used but all of this work appears to have been dismissed and disregarded by someone who has not even looked at the positive results of the 21 people who are being treated with Respreeza.

The United States Food and Drug Administration and the EU have not only approved Respreeza, the EU is reimbursing it for patients. It defies logic that Respreeza works everywhere else in the world but not in Ireland, apparently. We know from the clinical trial conducted in Ireland and in over 12 other countries that Respreeza has been life-changing for Alpha-1 patients. Not only has it been conclusively shown significantly to slow down the progression of the disease by 34% and, therefore, increase life expectancy, we know from research of patients in Ireland in receipt of it that it has made a huge difference in their daily lives. Irish people on Respreeza strongly believe that the drug has stabilised their condition, with almost 84% reporting an improvement in general symptoms. This was supported by a reduction in the frequency and severity of chest infections and associated hospital admissions. Chest infections per annum dropped by 68% while hospitalisations as a result of chest infection decreased by 69% per annum. People also reported improvements in their ability to work and to lead an active and fulfilled family and social life.

This form of therapy is already available for patients in eight European countries, including Portugal, Italy and Spain and in the United States. When will it be available for patients in Ireland?

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