John Crown (Independent) | Oireachtas source

I apologise for coming and going, but I am also dealing with another matter this morning.

I am in the grip of double jobbing, for which I apologise.

This has been one of the most extraordinary stories in modern medicine. People forget this, but it is simply amazing. If anyone had predicted, even in 1989, that treatments routinely available within 15 years would be so good that, as far as we know, most patients with HIV infection would be actuarially restored to a normal life expectancy curve, rather than facing the uniform death sentence which applied heretofore, it would have been regarded as science fiction because medicine does not work like that. This was an extraordinary achievement which involved brilliant science and good medicine. The various activist groups had a lot to do with it and deserve great credit for pushing hard for increased investment in research at a time when it was regarded as a lower priority research undertaking. People who have this virus need to know they have it because the treatment available is really good. Not knowing that they have it poses substantial risks to their health. One message that needs to go out is that testing is good. People need to know their status not, as was the case in the 1980s, because of some societal warning that they should not be taking risks for somebody else's sake, although that is important, but for their own health. There will be further advances and, obviously, it is hoped a vaccine will be found.

Key issues that will arise in the coming years include the right to confidentiality and insurance. These are complicated issues which have to be dealt with differently now that we know people will survive with the disease. All of the concerns about issues such as life insurance, mortgage protection insurance and health insurance need to be seen in a totally different light. In the past somebody with an incurable disease such as Crohn's disease would not have faced the same strictures in respect of insurance and confidentiality compared to somebody with this disease. We need to normalise our understanding of it. It is another chronic illness such as rheumatoid arthritis, epilepsy, diabetes or, increasingly, many forms of cancer. It can be treated and people will live with it. We need to develop structures in the health system, insurance market and our general attitudes to reflect this reality.

Somebody needs to sit down to write the wonderful story about how this disease was contained in a totally different way from what had been expected. The original notion was that it would never be treatable and that a vaccine would instead have to be developed. The outcome has been exactly the opposite. It involved extraordinary work in the area of molecular biology.