Joanne Ryan (Lalor, Australian Labor Party) Share this | Hansard source

Deputy Speaker Freelander, I firstly want to congratulate you as the deputy chair; the member for Sydney, of course; and all the members we've heard from today who are on the committee. I'll be brief. My contribution today is an acknowledgement of someone who was not on the committee but whom the committee heard from. I want to draw the attention of the House to the story of one of my constituents, who I've spoken about prior to this report in this House, and I want to congratulate the committee on the bipartisan report The new frontier: delivering better health for all Australians.

In the middle of this year, I was contacted by the amazing Sue Tantaro. Sue wanted to contact me on behalf of the Save Our Sons campaign to provide a local, anecdotal example—her family's story—of muscular dystrophy. Sue Tantaro has three grandsons, Anthony, Jacob and Lucas, who have duchenne muscular dystrophy.

A few days prior to the meeting, Sue rang to tell me the deeply sad, tragic news that her beautiful grandson Lucas had unexpectedly passed away. This determined grandmother, with indescribable grief, didn't cancel the meeting, because it was too important for her to have the opportunity to speak for the boys in her family—and boys like her grandchildren all over the country—to her local MP. She understands that we in this place need to understand their needs and their hopes.

She used her grief as inspiration to pursue clinical trials on gene therapy. I promised Sue that I would assist her in any way I could, to help her make life a little easier for Anthony and Jacob and boys like them across the nation. That's why I am speaking today on this report.

Sue also met the member for Macarthur, who I also want to thank for his dedication generally and his work in this place on a report like this. While this report speaks to a range of ways to modernise how we treat illnesses and disease, I really want to speak on Sue's behalf today.

As the member for Macarthur pointed out in the tabling of this report, one of the most important things that have come out of the report is the importance of patient centred care; a cooperative and collaborative approach to health care; and, as we heard the member for Higgins reference this afternoon, the prioritising of patient voice in our health space and in our decision-making.

The report discusses evolving genetic treatments for fatal disorders such as duchenne muscular dystrophy—the very treatment which Sue is fighting so hard for. I want to echo the member for Macarthur's words about how wonderful this treatment could be as a way forward to curing the illness. The report really does provide a pathway for how we in this place develop our health policies and approach treatments in a modernised way, and I welcome the report's call for a centre for rare diseases.

Circumstances, hardship and a desire to act create heroes of ordinary people, and that's what Sue is. She is such a hero. I want to congratulate the committee but also thank people around the nation like Sue, whose voices shape the way we act in this place on such important issues.

I would finish by saying that it is an incredibly strange thing to do to sit with someone like Sue and hear their story. In the moment, with that person, you know that you want to do everything you can to help them. But it's sad that, at the moment, in our health system or when we're making decisions, we're relying on those voices to come to us rather than having a system where that kind of advocacy is not required. However, I don't say any of that to limit the power of the advocacy from Sue and from grandmothers and grandfathers and mums and dads and patients all around the country.

I want to again congratulate the committee and again reiterate to Sue, through the chair, that she will always be front of mind when it comes to how I approach these issues. I hope she had the same impact on members of the committee.

See this speech in context