Catherine Ardagh (Fianna Fail) | Oireachtas source

I welcome the visitors from the university to the Public Gallery. I also join with my colleagues in thanking Martin Groves, Bridget Doody and all the team in the Seanad Office. People always describe the Seanad and the rest of the Oireachtas as being like a swan going along gracefully while underneath there is much going on that we do not see. I thank all the staff of the Oireachtas, including our ushers, caters and cleaners, who make this a beautiful place and a wonderful environment for us to work in. I thank everyone.

I call for a debate on the funding of high-tech drugs for cancer and rare diseases. We have procedures, systems and offices in place in this regard, such as the National Centre for Pharmacoeconomics, NCPE, and the corporate pharmaceutical unit, CPU, in the HSE. Ultimately, however, these offices and the systems in place to assess high-tech drugs are archaic and need to be reviewed in light of the technological and scientific advances that have been made. In a quote I love, Dr. Mike Ryan said during the Covid-19 pandemic that we need to be fast and have no regrets and that if we need to be right before we move, then we will never win. Many stakeholders in this context, when they are talking to us, tell us the NCPE is taking months to look at new applications for drugs. By the time the centre gets around to even looking at a drug, another has been developed. Cancer and rare disease patients, ultimately, are missing out on life-saving opportunities. After a potential new drug goes through the process with the NCPE, it then goes to the CPU of the HSE for a price to be agreed. This unit, though, is also underfunded. This is similar to the situation with many of our offices around the country which deal with applications from citizens and drug companies. It is important that we have a root-and-branch reform of how we refund and reimburse high-tech orphan drugs.

I will quickly refer to a request from a rare disease organisation. We are far behind when it comes to genetic screening in Ireland. This organisation is calling for six genomic resource associate staffing roles to be put in place as part of the Children's Hospital Ireland, CHI, group. It is important we do this. Once we spot a genetic condition, such as the BRCA gene, for instance, there are treatments and people will also be able to get assessed, monitored and live longer as a result. The request in this regard then is to allow people to live longer and healthier lives.