Hepatitis ‘Take Action’ Day – 4th of August 2015 (as delivered)

Like Most Australians I had heard of hepatitis, I didn’t really understand it, I didn’t really care much about it as I didn’t have it, so why would you bother. But with all these sorts of things you become vitally interested when someone close to you gets involved in that disease. 

I have a nephew who as a child had haemophilia problems and required a blood transfusion, during the time where they didn’t test blood transfusions, to clot his blood. He then contracted without knowing it hepatitis C. He lived with it for much of his life and only in recent years discovered he seriously had hepatitis C. Again lived with it for a few years and then realised that it was affecting his liver and that if he didn’t do something about it or his life would be terminated early.

He is a successful small businessman, has a lovely wife, two wonderful young boys, He was told to start and finish his family before he started on one of the treatments that were available at the time. He took one of those treatments, it was 48 weeks, 48 weeks of hell for him and perhaps more importantly for his very supportive wife and family. He runs a very successful small business trades and services operation in Home Hill. A very full order book but of course his debilitating disease, perhaps more significantly the debilitating treatment, made it very difficult for him to fulfil the commitment he made in his business.

But he went through the 48 weeks of treatment, the results weren’t guaranteed, but I’m pleased to report as I just said to Cliff, that since my nephew came down to Canberra for the Australian launch that Cliff talked about, he has had his six month test after the conclusion of the treatment and he has been one of the fortunate ones that has had the disease expelled from his body and so God willing he is right for the future.

But I know from living in the same town as my nephew just what an impact that was on his family as he went through this treatment.

As a parliamentarian a lot of people come through my door both here in Townsville and in Canberra seeking my assistance in any number of ways with different decisions governments have to make. A number of pharmaceutical companies have over the year come through my door, explaining to me their treatments and making an argument on why the Government should spend your money on supporting these treatments through the Pharmaceutical Benefits Scheme. One of those that came through my door was a group involved in the research into cures for hepatitis C and I was delighted to be able to support them because as I mentioned I had an interest in it.

And as Cliff mentioned this one treatment, and I think there are several around now, but this particular group came to me and they were the ones that said instead of what your nephew went through over 48 weeks, we have now developed this drug, which as I understand it you take a pill for 12 weeks and at the end of the time you are cured, a 98% chance of being cured and you have none of the side effects that my nephew suffered. So I thought that was a fantastic idea and I contacted the health minister and said that this should be seriously looked at.

 Since that time the Pharmaceutical Benefits Advisory Committee has looked at the drug closely and has recommended to the Government that it be placed on the PBS. I said to the Drug Company don’t tell me exactly how much it is worth as a lot of this is commercially secret, particularly when they are competing with other companies, but they said to me that the cost of a single treatment is about $80,000. So if you wanted to take that treatment, which perhaps if you had the disease and it was a matter of life and death, perhaps you would sell your house to have the treatment but most people of course couldn’t afford to do that. But I am pleased to say that the Pharmaceutical Benefits Advisory Committee has recommended to the Government that it be placed on the PBS.

If the government accepts the recommendation, people will be able to get access to this drug for $36 or whatever the co-payment currently is, but certainly not the $80,000 that it costs. Some people say that these pharmaceutical companies rip people off and charge exorbitant prices for drugs that are lifesaving but I recognise that they spend enormous amounts of money doing the research to discover these drugs and of course as commercial operation they are entitled to get a return on the research they do. But it does mean that Government have to fund these treatments to a fairly significant degree.

Now I always make the point of course that Government don’t have any money at all. They only ever use your money and so Government have to be careful how they spend your money and of course there are enormous calls on the Government for using your money for all ranges of things right across the governance spectrum. But I am very confident that this new drug will be adopted by the PBS, that the Government in the not so distant future will make the decision to include it in the PBS.

The government has a few extra process and steps to go through.  They will I believe negotiate with the drug companies involved and hopefully the Government will come to a deal with the Pharmaceutical companies that will allow it to made available for all those who do suffer from this debilitating illness.

The other reason I’m here today is to help promote the need for people to understand and recognise hepatitis, to seek medical assistance if they think themselves to be infected or if they know friends or relatives who might be. It is essential that they get medical treatment, medical advice at the earliest possible time. I am no expert when it comes to medicines - I pay my doctor a fortune because I am a bit of a hypochondriac myself but that is about the extent of my knowledge, but I understand that you can be vaccinated against hepatitis A and B. Hepatitis C has always been a bit out there and been beyond the spectrum but as I say I am delighted to see that there are a number of drug companies who now think they have the cure, the cure that has been tested and proved and all it needs is to make sure that the Government does make your money available to support the cures that are there.

A lot of people who have been associated with hepatitis don’t seek treatment as they feel a bit embarrassed about it, there is a stigma and some discrimination against those who might have the disease and as such are reluctant to come forward and seek help. That is wrong and shouldn’t happen and as far as I can in my role in the Federal Parliament, I’ll be saying to people if you know of anyone who has the disease, get medical help, a cure is possible and it needs to be done.

I might just say in concluding at the Canberra launch, there was a guy who spoke to us there who has hepatitis C and he’d had two liver transplants. He had a transplant and apparently the body works in such a way that the first transplant was absolutely excellent and worked brilliantly but the disease was still within his body and so the first transplant had to be replaced with a second one when the first liver was infected. He was a very courageous man to first of all go through it and then secondly to stand up and tell us all about it. It was a very moving and courageous experience that he shared with us. But just on a commercial governance, economics issues, you sit down and think that while these treatments are expensive, just what would those two liver transplants, if you can find someone prepared to donate a liver, what would have that cost in monetary terms. And so perhaps $80,000 a treatment is pretty cheap when you look at the costs of other cures that might have been available.

Ladies and Gentlemen, so I support the work of Hepatitis Queensland and Hepatitis Australia. They do a wonderful job, these organisations always fly a bit under the radar but they do a fabulous job in helping people in need. This book has some wonderful stories in it. I urge you to have a look at some of them. I particularly refer you to page 8 and 9 which is my nephews’ story and I must say my name is in print there too! So you can read that page as well. But it does have some very courageous stories, wonderful stories of people who have fought and succeeded against this horrible disease. 

I congratulate the organisation for what you do. I found a shirt I think might fit me, so I will wear this with pride around the town and I urge you all to do the same because we really need to take it out of the discrimination area, out of the stigma area and say it is a disease and is now a disease that can be cured and we need to make sure that everyone knows that and we can help everyone with the disease and try prevent others from getting it. So Cliff thanks for inviting me along and all the best for you and your work into the future.

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