Maria Vamvakinou (Calwell, Australian Labor Party) Share this | Link to this | Hansard source

I'd like to draw the attention of the House to a petition that was submitted to the Petitions Committee by one of my constituents as the principal petitioner, Jelena Magic, whose three-year-old son Marco Magic suffers from a rare form of cancer known as neuroblastoma. The 5,620-strong petition calls on the government to improve access to breakthrough clinical trials in Australia or overseas and to better recognise the issues children and families affected by high-risk neuroblastoma are facing.

Clinical trial support and access to novel therapies have been lacking in paediatric oncology units across Australia. Children with this rare high-risk neuroblastoma face many months of intensive treatment but are also at high risk of relapse. Presently Australia doesn't have capability in preventive trials to reduce the chances of relapse, or less toxic antibody trials for relapsed neuroblastoma. Families therefore are forced to raise what are always significant funds, often in the hundreds of thousands, through crowdfunding and other sources, in order to access these vital trials overseas, in order to improve their children's chances of survival. The Medical Treatment Overseas Program excludes clinical trials from financial coverage due to the lack of evidence that is available for these particular trials. The PBS only lists drugs proven to be efficient for a particular cancer and only if the pharmaceutical company deems it economically wise to seek opportunities in the limited Australia market.

The petitioners wish to challenge the notion that the lack of evidence means the lack of efficacy. Presently, Australia is lagging behind the United States and Europe in terms of availability of breakthrough clinical trials and novel therapies for treatment of high-risk neuroblastoma that could be applied in the clinical setting. The petition requests the House to open the Medical Treatment Overseas Program to cover participation in overseas clinical trials when supported by the treating oncologist, as is the case with little Marco Magic and other children like him. The petition also calls on the Australian government to invest in Australia's participation in international trials and to assist oncology units across the nation to provide a wider range of therapeutic options to their patients, and calls on the government to implement methods to effectively manage the risk of accepting treatments with limited clinical evidence and adjust the system to be flexible to meet the needs of each individual patient.

Young Marco Magic will be hopefully heading off to the United States for life-saving clinical trials very soon. He is able to do this because his parents in particular, Jelena and Andrea, have fought very hard to save his life, but also because of the great contribution of the Australian public through the crowdfunding campaign that they, in conjunction with Rare Cancers Australia, waged recently.