Kay Patterson (Victoria, Liberal Party) Share this | Hansard source

Firstly, I thank Senator Nettle for her support of the bill and for her constant questioning of people who came to the committee on this issue. I admire her zeal. I suppose a bit of the gloss has gone off my zeal as I have got older, but I hope I still have a bit of zeal left in me. Putting this bill up has indicated that I have a bit of zeal; I thought I had gone into semiretirement but I needed to come out of it to do this, because I felt so strongly about it.

I can understand what Senator Nettle is saying. One of the things that absolutely stunned me when I was health minister was finding out about an enzyme deficiency disease which about 10 or 15 Australians suffer from. Scientists have developed an enzyme which acts as a replacement and these people have a significantly better quality of life. It was assessed as being efficacious through our normal procedures. I cannot remember exactly what it costs—I was going to try to find out, but I have been busy this week—but each year the health minister signs off on treatment for people with this particular enzyme deficiency; it requires ministerial approval and the minister signs a document. I think I would not be misleading the Senate to say that the cost for one person was over $200,000 for one year. Each year they get reassessed and the doctors estimate how much of this enzyme a person will need and what it will cost for the following year. It is something in the order of about $146,000 or $150,000 per person per year.

Because there are so few people across the world with this disease, all the investigation and research that goes into the production of this enzyme is built into the cost. I used to marvel as I signed these documents, for about 10 or 15 patients, at what an amazing country we live in such that someone with this sort of enzyme deficiency who required treatment could have it. People have views about pharmaceutical companies but this enzyme was discovered, put through clinical trials and is available. So we do have a system where if a procedure or treatment is efficacious then it is made available.

I see the sort of goal that Senator Nettle has in getting the NHMRC to focus, when they are approving licences, on taking these issues into account. Now, as Senator McLucas said, this has gone a little faster than we thought. We did not think we would get to the committee stage until tomorrow. I have actually asked the minister if we could get somebody from the NHMRC to comment in a technical way on the doability—if there is such a word—or otherwise of this. So if I, and others, can keep talking until we get to question time, we can actually have the opportunity of asking the NHMRC, because I think it has been approved, about the technical detail of this.