BILLS - Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 - Second Reading

BILLS - Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 - Second Reading Main Image

I rise today to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. At the outset, I would like to dedicate my speech to a little girl called Gabriella, who died, unfortunately, just before I entered parliament and who I cared for prior to her death. She died at age three from mitochondrial disease. It's hard for me to speak on this bill without getting emotional.

I acknowledge the views of my colleague the member for Fowler, who I deeply respect. He knows that. I disagree with him on this bill, but I acknowledge the thought that's gone into his speech and, indeed, the speeches of all the members who will speaking on this. I want to pay tribute to the minister for health; the shadow minister for health, Mark Butler; the previous shadow minister for health, Chris Bowen; and the member for Higgins, Katie Allen, who has worked with me to explain the basis of this bill.

Very quickly, mitochondria are the little organelles in every cell that produce energy. Every cell requires energy to survive. The energy is in the form of a chemical called adenosine triphosphate, or ATP, and the genetic defects that cause mitochondrial disorders involve ATP production. Without energy, cells die, and those that require the most energy are the ones that are most severely affected. That includes things like brain, muscle, liver et cetera. Mitochondria contain about 0.1 per cent of a cell's DNA, and we inherit our mitochondria from our mother, because the sperm have very few mitochondria. When they enter the maternal egg, the maternal mitochondria are the ones that we all inherit. Defects in the nuclear DNA can cause mitochondrial disorders, and defects in mitochondrial DNA can cause mitochondrial disorders. Mitochondrial mutations are present in about one in 200 people, and about one in 5,000 people will be born with mitochondrial disorders that cause severe illness. That means about 50 to 60 children every year in Australia.

This bill is a bill about hope. This gives people who have had a child with a mitochondrial disorder the chance of having a child with their own nuclear genetic make-up who will survive and be healthy. Mitochondrial disorders are horrific disorders to look after. There is no real treatment, and I've seen a number of kids with mitochondrial disorders not survive. Many of them have recurrent neurological problems, gradual deterioration in brain function, epilepsy and recurrent episodes of collapse, with severe metabolic acidosis. I've treated them for a number of years. Usually it becomes a problem of recurrent admissions to intensive care, with intractable seizures, gradual deterioration of brain function and death. I've seen parents have to bury their children, and that's a pretty horrible thing. To me, anything we can do to avoid this is really important.

Mitochondrial transfer, which this legislation before the House today allows, provides parents with hope. It enables parents to conceive children that they are biologically related to without the risk of passing on defective genes that would ultimately lead to a mitochondrial disorder in their child. It is cutting-edge technology—there's no question about that. But we know that it is the one thing we can offer to these families that may allow them to have a normal, healthy child. There may be other IVF techniques that can be used, but they do not produce a child that is genetically related to both mother and father.

We should never, I think, lose sight of the real human impact that these illnesses have on families and the message of hope that this will give them. It's a step towards ensuring that parents can raise children who have quality of life, a long life free of the burdens of mitochondrial disorders. That's what we're talking about. We cannot lose sight of the profound impact that mitochondrial transfer will have on a patient's quality of life and normal life expectancy.

Many types of mitochondrial disease, up until now, have been named after the clinicians who have first described them, mainly because there's no treatment. We are talking about disorders called Leigh syndrome, Leber hereditary optic neuropathy, and Kearns-Sayre syndrome. Other disorders are named by acronyms, such as MELAS or mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes; DAD or diabetes mellitus with deafness; or myoneurogenic neurogastrointestinal encephalopathy. They are all terrible disorders. There are many others. Symptoms can vary greatly, but many children have severe behaviour change initially; extreme lethargy; seizures; recurrent comas; ataxia, meaning a movement disorder; and visual disturbance. Some have severe vomiting; others have a failure to thrive. I have recently seen a child with severe failure to thrive who had mitochondrial disorder. Symptoms wax and wane, but the gradual trend is for deterioration. The clinical course is very distressing to all involved, including clinicians, parents, relatives and others. Apart from supportive care, there's very little that can be offered. But, because of advances in IVF and genetic therapies, techniques have been developed which may allow the affected family to have a healthy, unaffected child. There are two main methods of mitochondrial transfer. There is maternal spindle transfer, which involves adding a mother's nucleus to a donor mother's cell after its nucleus has been removed, prior to fertilisation. And there is pronuclear transfer, which occurs after a sperm enters the egg but before fertilisation is complete.

I have no hesitation in supporting the legislation before the House today, and I encourage everyone in parliament to support its passage. It gives hope to these families, and that's the one thing we can offer. Some of my colleagues have concerns based on their own ethical beliefs, but this legislation is above all about providing a choice to families, a choice to participate in a trial which could lead them to conceiving a healthy, happy child. Who are we to deny that choice?

As I have mentioned, I want to thank the minister for health. He's a decent man, and his passion for the patient experience is demonstrated through his resolve to bring forward Maeve's Law, which may not have been easy. I also want to acknowledge a number of parliamentarians, including the shadow minister for health, the previous shadow minister for health, and the member for Higgins. I'd also like to acknowledge the work conducted by the National Health and Medical Research Council, led by my friend John Rasko, and their review, which ultimately led to this legislation being drafted. It really is important, and they have done some very important bipartisan work. We wouldn't be at this point today, however, without the wonderful advocacy by the Mito Foundation, led by Sean Murray. Sean has been indefatigable in his approach to parliamentarians of all persuasions, and I thank Sean for his determination, his counsel and the efforts of his entire team at the Mito Foundation. I also had the privilege of hosting Oliver Hervir as an intern in my office in recent months, as part of the ANU parliamentary internship program. He's a very bright man with a very promising future. During his time in my parliamentary office, Oliver was tasked with producing a research paper for me on mitochondrial transfer as part of his university experience. I thank Oliver for his wonderful work. I have distributed his work to all my parliamentary friends and it's been extremely valuable in explaining the importance of mitochondrial transfer.

To me, this is very important work that we as a parliament can do. I recognise the importance of the conscience vote. I hope that this bill will be passed by this parliament because I think it's a very important first step for the families of the children I've cared for who've had mitochondrial disorders. I know that this first step will require the support of one or two organisations who will conduct this trial, but families do have a choice as to whether to join the trial. I think it's important to recognise that, no matter what we feel personally about the bill, this at least offers those families hope. I can remember the children with these very distressing disorders who I've looked after over a long period of time. Part of my role in this House is to bring forward these issues and to support these issues that would benefit my patients and my colleagues.

I think the House for the indulgence of listening to me about this. I do feel very strongly about it. I know there are many others who will talk on this bill who also have personal involvement. I thank them for their work and what they are doing to bring forward this bit of hope from our federal parliament about this very important issue. I thank the House. I commend this bill to the House. I strongly support it, and I thank everyone who has supported me throughout this journey of more than five years.