Jason Wood (La Trobe, Liberal Party) Share this | Hansard source

I strongly support this bill establishing the Medical Research Future Fund. It establishes a fund for medical research initially with a contribution of $1 billion and eventually $20 billion. For the life of me, I cannot believe Labor is not supporting this bill outright. The only time people ever become aware of the need for a medical research fund is when there is a tragedy in the family or the community and someone finds out all of a sudden that a person has a rare disease, a rare illness. I have found that in my electorate on a couple of occasions. Normally the people concerned have seen doctor after doctor and eventually they come across a medical specialist who realises what the illness or the disease is. That is why I cannot believe the Labor Party is not fully supporting this medical research fund bill. It is a brilliant bill, and it is about all those young people sitting up in the gallery today—it is about their future and about the future of all Australians.

In 2007 some parents came to visit me in my office in Boronia. They were the Webbers, who lived in Beaconsfield, and they had a little boy called Jimmy, who was 12 years of age. The parents could not tell me what Jimmy's future was with Jimmy in the room, so we asked Jimmy to leave. It soon became very apparent that he needed some urgent surgery. He had pressure on his optic nerve, and the problem was that the anaesthetist did not want to put him under because he had polyps in the throat and the dilemma was that if they undertook the surgery he could die but if they did nothing he could go blind. It was an awful situation for parents to be in. I asked them whether there was anything we could do, and they told me there was a miracle drug called Elaprase, developed in the USA. This is what we want to see—we want to see drugs like Elaprase developed in Australia; that is what this fund is all about. The drug was not available through the Therapeutic Goods Administration as it was still undergoing evaluation. Jimmy needed this medication urgently but it was not cheap—it was between $600,000 and $800,000 per year. Why was it so expensive? Because pharmaceutical companies need to get some return for doing this incredible research into drugs like Elaprase. I approached Dan Brown, the CEO of the company, Genzyme, and had a chat to him about whether we could put Jimmy on a trial—there were a number of trials going on in Australia at the time for Hunter syndrome. Initially we did have some resistance but I congratulate Genzyme because we eventually had some success. Working with them, compared to many other pharmaceutical companies, was a pleasure. They could see the common sense in putting Jimmy on a trial, and in return I would move heaven and earth to make sure we got Elaprase listed. The great news was that Jimmy did get the drug and he is now doing fantastically in life. The great news, too, was that all the other sufferers in Australia also had access to this drug, and also similar ones called MPS1 and MPS2.

The side effects of Hunter syndrome in severe cases include altered facial features, profound mental retardation, spasticity and aggressive behaviour. The very worst-case scenario is that most are boys and most do not survive until the age of 20. I did have some parents in my electorate in Officer who, once we had the drug approved, did at a function tell me that their child had died of Hunter syndrome but how grateful they were to know that he had not died in vain. I congratulate my colleagues at the time—we all signed a letter which we presented to John Howard, and I believe the current Prime Minister, Tony Abbott, was the health minister, and under the Life Saving Drugs Program of the Pharmaceutical Benefits Scheme the drug was made available for the treatment of Hunter syndrome. It was great news that we got the drug.

I come back to the key point—the medical research fund. I know the Treasurer was criticised for this at the time, but the most important time in someone's life is when they need help. The benefits from this fund will be astronomical for the families it will help in Australia—but also overseas. Australia is a well to do country and you normally find that medical researchers, who do such a fantastic job, will naturally share their breakthroughs with other countries. That is what scientists are about. They go into their field to help other people.

Another example of a lifesaving drug was brought to my attention by Jenny Scott, who is the grandmother of Bianca Scott. Jenny lives in my electorate, and Bianca suffers from aHUS. I have also met in my electorate young Holly Van de Loop, who also suffers from aHUS. In 70 per cent of cases, aHUS is associated with the genetic or acquired abnormality of a part of the immune system known as the complement system. This can lead to severe inflammation of the blood vessels and blood clotting that damages kidneys, causing them to fail. aHUS can occur at any age, with nearly half of all people diagnosed aged 18 and over. This disease is just as life threatening in adults as it is in children. Within one year of diagnosis, 64 per cent of patients with aHUS will, tragically, die, require dialysis or develop permanent kidney damage despite plasma exchange, which is very expensive. This paints a very bleak picture.

But again through medical research there was a breakthrough—a drug called Soliris. When Jenny Scott, Bianca's grandmother, approached me about the capacity Soliris had to save her granddaughter's life, I knew I had to act. Tragically, Jenny's son died of the same illness. So I fought hard to have Soliris provided to Bianca and Holly—as I had for Jimmy Webber. I congratulate all the members of parliament involved in this—in particular, my colleagues from Queensland who worked with the New South Wales health authorities. They arranged for Bianca to receive the drug she needs so vitally. I congratulate Minister Peter Dutton on his negotiations with the company. It saw a great outcome for all aHUS sufferers in Australia. Holly will now be able to use this drug if she ever needs it because now Soliris is listed under the Life Saving Drugs Program.

This is a great example of why the coalition supports having in place a fund which, no doubt, will make incredible breakthroughs in medical research in Australia and throughout the world. We have to back our scientists. We have to back our researchers. We have great universities in Australia. We need to support them and their medical research teams—and all scientists.

A medical research fund benefits hospitals and health care providers. In that, they will be able to engage in active research to provide for more effective health care, have access to pioneering clinical trials—and clinical trials are so important—and attract pioneering health professionals. Presently, the Australian government only invests 0.075 per cent of our GDP on health and medical research. This is just 64 per cent of the OECD average. We need to greatly improve this—and the beautiful thing about this fund is that it will improve this. Every dollar invested in health and medical research generates an average return of $2.17 in benefits to the nation. Australia has its own unique approach to medical concerns. With Indigenous health problems, tropical infectious diseases and emerging health risks specific to our country, it makes sense for this research to be Australian based. Given all of this, I would hope it is now very clear to the Labor Party that it should support the medical research fund.

In closing, I would like to use the words of Professor Christine Bennett AO, the Chair of Research Australia:

Investing in health and medical research is about better health and well-being, greater productivity and a stronger economy, and giving hope to people living with health problems for which research is the only hope.

I recommend that members of the parliament attend a Rare Voices function. I congratulate Steve Irons for the great work he has done with this group. When you go there and meet the parents and the children who are suffering with rare illnesses, you will see that this fund is about helping them. I very proudly support the Medical Research Future Fund Bill 2015.

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