Ms Avril Daly:

From the perspective of treatment, and certainly with my disease in the retinal space, we are aware that our neighbours in Europe, and patients we know, are getting access to therapies that we are not now after two years. Much of the difficulty is in the data because we are dealing with small populations. We are dealing with a situation many of us are familiar with now in the context of vaccines for Covid-19. We are learning as the treatment is rolled out. We do not have the registers to monitor that, which is a challenge for the HSE. One can understand where that challenge is. We are also not sure how many people in the country can avail of this because of lack of genetic testing. There are, therefore, many problems.

It tends to go back to having the infrastructure to deliver a therapy. We talk a lot about cost and value. If we do not have the system set up, however, we are going to further delay. People's hands are tied in that sense. There are, therefore, many issues at play here. It is really going back to the fundamentals of the delivery of care for the future. As we said, the time is now. These are the challenges and big conversations need to happen. The reality is that patients engaging with this can create situations where they can provide real world evidence as to how these conditions or therapies can impact them as they go on. They have a lot of information and they need to be listened to.