The long road to get Maeve’s law before Parliament

Joel and Sarah Hood have been tireless advocates for allowing IVF technology that could prevent mitochondrial disease, but talking about the rare but serious illness for years has taken its toll.

“As much as we like to put ourselves out there as a family to try and see change for other families, it is also quite difficult because it is a reminder of Maeve’s situation,” Joel said.

Joel and Sarah Hood’s five-year-old daughter Maeve lives with Leigh’s syndrome, a serious mitochondrial disease.Credit:Mito Foundation

Maeve is their five-year-old daughter, a happy girl who has loved her first year of kindergarten but also lives with Leigh syndrome – a severe mitochondrial disorder that means she’s unlikely to live beyond her eighth birthday.

“We obviously would like to know that her life wasn’t in vain, and that hopefully something good will come of it,” Mr Hood said.

This week, the mitochondrial donation bill, called Maeve’s Law in honour of Maeve Hood, is set to go to a conscience vote in Parliament. The moment has been years in the making, with tireless advocacy from families like the Hoods and the backing of paediatricians in Parliament. It has also not been without controversy, with religious groups and some parliamentarians opposing the idea.

Mitochondrial disease is the name for a group of life-altering or life-shortening disorders that occur when faulty mitochondria fail to produce energy in the body’s cells as they should. It’s rare, but there is no cure as it affects every cell in the body.

Prevention is the only option, and this can be done through mitochondrial donation. The procedure works by replacing the faulty mitochondrial gene in an egg cell with a working gene from a donor egg.

Health Minister Greg Hunt said about 50 babies were born a year with a severe form of mitochondrial disease, and many of those children will die before they’re five.

“This bill will help to ensure that young children who would otherwise be born with an inherited genetic condition that could dramatically reduce their lives, instead be able to live a rich, full life,” he said.

“We know there will be people with different views on this issue, be they ethical views, religious views, or any other. A free vote on this issue is a rare sight in Parliament and I hope to be joined by my colleagues in voting for this important legislation.”

Debate on Maeve’s Law is slated to begin on Monday, and when it goes to a vote it will be the first conscience vote since the same-sex marriage vote in 2017. While it has majority support, there are several MPs who do not believe it should be enacted.

Labor MP Chris Fowler said he has weighed his ethical concerns carefully, and won’t be supporting the bill.Credit:Dominic Lorrimer

Labor MP Chris Hayes, a Catholic who is retiring from Parliament at next year’s federal election, will vote against the bill.

Mr Hayes said that while he felt “very sorry” for the families of the children born each year with severe mitochondrial disease, he could not support the legislation on ethical grounds.

He said the high mortality rate and long-term health problems associated with mitochondrial disease had prompted him to weigh his ethical concerns carefully, as he would “support any ethical and sustainable ways of mitigating these risks”.

“As legislators, we must balance what’s seen as the possible benefits to humanity while not compromising our ethical obligations,” Mr Hayes said.

Mr Hayes said he was also concerned the legislation could lead to commercial incentives being offered to women to donate eggs, given the limited supply of egg donation in Australia.

Mr Hayes holds similar views to the Catholic Church of Australia, which pointed out there was little information from Britain on the safety or efficacy of the procedures despite mitochondrial donation being legal in the UK for several years.

Bishop Richard Umbers, bishop delegate for Life with the Bishops Conference said the church appreciated the “deep desire” for parents to avoid passing on mitochondrial disease, but this was the wrong way to go about it.

“So far as we know, no baby has ever been born using this experimental treatment and the Department of Health warns that neither the risks for a child born nor the long-term effects on future generations are understood,” he said.

“The Parliament should focus on therapeutic research rather than risky treatments.”

Dr Mike Freelander and Dr Katie Allen, both paediatricians, have worked behind the scenes to educate their colleagues on the bill.Credit:Dominic Lorrimer

Labor MP Dr Mike Freelander, who has worked as a paediatrician for nearly four decades, has worked closely with Liberal MP and paediatrician Dr Katie Allen to gather the support of their colleagues for the law.

Dr Freelander, who has treated patients who have died from mitochondrial disease, said they’re “dreadful disorders” and it was time for politicians to stop standing in the way of this medical innovation.

“It’s time that we actually make a decision,” he said. “It’s cruel to keep dangling this carrot in front of people and pulling it away all the time.”

Maeve Hood, whom the law is named after, with her parents, Joel and Sarah Hood.Credit:Mito Foundation

Dr Freelander said this law is not about allowing a free-for-all of genetic alteration, but rather providing strict, legislative oversight and allowing one or two medical facilities to start trials to find out which methods work best.

“I’m a strong believer in having legislative oversight, but I do believe that this is something that its time has come, and we need to be adopting,” he said.

Mito Foundation chief executive Sean Murray said the reality was it would be about a decade before any treatment was available outside a clinical trial setting.

“There is some talk of these designer babies and slippery slopes and what else will it lead to, but by the way the legislation is being defined, the scope is extremely limited just to those families who will be at risk of having children with these horrible diseases,” he said.

Mr Murray said families have put off having children in the hopes of this law passing, while others have rolled the dice and chosen to fall pregnant naturally.

“It would be life-changing for these people, to provide them the opportunity to have a healthy, biologically related child,” he said.

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