Hope for families as Government delivers

Genea

SYDNEY, 11 May 2021: After more than a decade of lobbying the Government to provide funding for pre-implantation genetic diagnosis (PGD) the Morrison Government has announced $95.9 million will be allocated to new tests on the MBS for genetic testing of embryos for specific chromosomal abnormalities.

Funding will financially support parents who carry a genetic disorder to screen their embryos during an IVF cycle, ensuring they don’t pass on a disease or potentially life threatening condition to their children.

“We congratulate the Government for responding to our submission and providing this much needed funding,” CEO of Genea, Tomas Stojanov said.

Genea submitted the application after watching the heartache suffered by patients desperate for a baby. “These families often already had a sick child or had a child die,” Genea Medical Director Associate Professor Mark Bowman said. “But PGD is an expensive process and people who need it haven’t been able to access it due to financial constraints.”

At present PGD, does not attract any Medicare rebate and can add as much as $6200 to the cost of a regular IVF cycle. The procedure, which involves analysing embryos before implanting them into the would-be mother, is the only way couples carrying a genetic condition such as Cystic fibrosis, Fragile X or Huntington’s disease can have a healthy baby.

Genea is able to detect more than 350 genetic diseases. “We pioneered PGD, our expertise and techniques are amongst the best in the world. Many clinics have followed our lead and modelled their approach to embryo biopsy on ours,” Dr Bowman said.

The announcement has been welcomed by couples such as Haely and Alastair O’Neill*, Haely is a carrier of Retinitis Pigmentosa (RP) and didn’t want to pass the genetic condition onto her offspring. Whilst she isn’t affected, Haely’s father was diagnosed in his twenties and is legally blind, Haely had witnessed her father live a challenging life.

“Dad always said he didn’t want our children to live with the disability that had made his world so hard. In our family, eight males have been affected by Retinitis Pigmentosa over the past 50 years but I am the final female carrier. By having IVF and accessing PGD we were able to rid the disease entirely from our family.”

The Drummoyne couple had to make numerous sacrifices to afford PGD, “we delayed buying a home, we didn’t go on a honeymoon, we gave up a lot.”

The couple had three stimulated cycles and a total of 12 embryos tested, of those many were either affected or a carrier, only two were appropriate for transfer. On the 22nd of June 2018, Heidi O’Neill was born to two very grateful parents. Two years later on 13 July 2020, Heidi then became a big sister and baby Astrid joined the family, after another frozen embryo transfer at Genea.

“We are so thankful the science is available, and we accessed the leading PGD clinic in Australia.”

Haely praised the Government on behalf of future patients requiring PGD, “if parents want to have PGD to prevent having a child with a debilitating disease, it makes sense for the government to financially support their choice,” said Haely.

“It is a momentous week, one that should be celebrated, we look forward to hearing more details around Minister Hunt’s announcement.” Dr Stojanov said.

Other counties including the United Kingdom, New Zealand, France and the Netherlands all provide some public subsidy for the medical procedure.

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