Peter Whish-Wilson (Tasmania, Australian Greens) Share this | Link to this | Hansard source

'The lengths you have to go to in order to save the life of a kid. The desperation, the hopelessness, and a health minister telling you on the phone that, unfortunately, we just have to wait. There is no tomorrow for some kids.' These are the words of Tyler Richardson, whose son, Harris, is currently battling high-risk neuroblastoma, a highly aggressive cancer that affects young children. Tyler is the lead singer of a well-known and beloved Tassie band, Luca Brasi, and has been able to use his profile and platform to raise awareness of neuroblastoma. I sincerely thank Tyler and his family for speaking out on this insidious disease during this very tough time. As a father myself, I can't begin to imagine what Tyler and Alex and so many others are currently going through.

Only 50 per cent of children diagnosed with high-risk neuroblastoma survive, typically after enduring intensive and painful treatment that can result in permanent hearing loss, organ damage and infertility. The rate of relapse for these children is 50 per cent, and the survival rate for those who do relapse plummets to around five per cent. But, critically, there is hope. There's a drug called DFMO that has demonstrated excellent results in reducing the risk of relapse. We know this drug can save lives. The US recently approved it, yet our government is senselessly letting paperwork and approvals get in the way of Australian children receiving the potentially life-saving treatment both here and overseas.

DFMO has been lodged with Australia's TGA, the Therapeutic Goods Administration, and has, thankfully, been granted a status which exempts Norgine, the pharmaceutical company making the drug, from a range of fees that normally apply to registration. However, Norgine's application could take up to 255 business days, up to a year, to be processed by the TGA. Sadly, some children battling neuroblastoma don't have a year to wait, and some Australian families are having to personally fundraise hundreds of thousands of dollars to travel to the US, which is the only way they can access this life-saving drug. But this overseas travel comes at an exorbitant cost, not just financial but also emotional. The drug must be taken several times across a two-year period, meaning families must uproot their lives and make multiple trips overseas simply to access a couple of tablets.

This is a risky and inefficient approach, as children treated with high-risk neuroblastoma are immunocompromised. They should not have to travel overseas when they are so vulnerable, only to go to a hospital to be administered a few pills, especially when there's a simpler solution. It's one I've written to health minister Mark Butler about. The federal government could fund the estimated $5 million to $15 million for DFMO treatment over two years in Australian hospitals under a special access scheme. That $15 million is 0.1 per cent of the federal health budget. This funding is a drop in the ocean compared to the $368 billion the government plans to spend on nuclear submarines or the $11 billion in annual federal subsidies going to polluting fossil fuel companies who make millions of dollars in profits. Governments make decisions about priorities, and how can it not be a priority to try and save the lives of children and make such an incredible difference to their loved ones who are supporting them? To deny children the right to life-saving medicine is unimaginably cruel. We need a solution urgently. We need funding urgently. Children with neuroblastoma do not have the time to wait for paperwork and approvals. Equity and accessibility of drugs that save lives is needed now to give kids like Harris the best possible chance of survival.