Push to approve fertility breakthrough that prevents deadly disease

TEN-YEAR-OLD Steph Woods plans to have lots of babies but she doesn’t want them to inherit the deadly condition that has damaged her hearing, her eyesight and left her in a wheelchair.

A scientific breakthrough that involves three-person IVF could prevent Steph passing mitochondrial disease on to her children and save the health system up to $66 million a year.

The procedure involves replacing the faulty mitochondrial DNA in the mother’s egg (0.1 per cent of its genetic material) with healthy donor mitochondrial DNA, so that the resulting baby is not at risk of mitochondrial disease.

The mitochondria in cells are responsible for creating 90 per cent of the energy needed to sustain life and support organ function.

When mitochondria malfunction, organs start to fail — people get sick, and even die.

Scientists claim this new procedure does not contribute to a person’s genetic identity because mitochondrial DNA only provides energy to the cells. But the procedure is controversial and raises complex ethical and legal issues.

A Senate inquiry has recommended the government examine changing the cloning act and the embryo research act to allow the procedure but no consultation paper has been funded and the policy change process has stalled.

A spokesperson for Health Minister Greg Hunt says the Government is considering the issues.

“The Minister strongly supported the calling of this inquiry and has a deep interest in pursuing significant change,” his spokesman said.

Until the law here is changed, couples who want to ensure they don’t pass on the life-threatening condition to their children will have to go to the UK for the experimental treatment.

Murdoch Children’s Research Institute’s Professor David Thorburn has helped diagnose more than 800 children with mitochondrial disease, the vast majority of whom have died in childhood as treatments are largely ineffective.

It’s estimated treating a baby with a severe form of the disease costs over $300,000 and Professor Thorburn estimates the health system could save $33 million to $66 million per year from introducing mitochondrial donation.

Sixty couples a year could benefit from the procedure and he estimates it would prevent five to 10 children being born with mitochondrial disease annually.

To date there is only one documented case of a child being born as a result of three-person IVF in a procedure that involved a US physician and a Middle Eastern family and took place in Mexico to get around US laws.

The child, now aged around 18 months, appears to be healthy.

Two couples in the UK had the three person IVF procedure in February and four others have since had the procedure but the first children are not expected to be born until later this year.

Steph’s mother Kylie Poppins says her daughter was diagnosed with cataracts when she was just 10 weeks old, at two she was struggling to walk, by four she had scoliosis, her hearing is damaged and now she needs a wheelchair.

While Steph’s mum says she wouldn’t swap her daughter for the world she believes new parents should have the ability to stop passing the condition on to their children by using three-person IVF.

“You should have done that to me, the disease is rubbish,” says Steph.