After a decade of lobbying and in response to a Genea submission, the Medical Services Advisory Committee (MSAC) has formally recommended the Federal Government provide funding for pre-implantation genetic diagnosis (PGD).
Funding would 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 are thrilled MSAC has listened and urge the Minister of Health to respond," CEO of Genea, Tomas Stojanov said. He added, "for more than a decade we’ve been representing families and refining our submission, we want to continue to work with Government to deliver an outcome." Genea’s submission and the recommendation have been welcomed by IVF clinics across the country.
"Genea has 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 Stojanov said.
Genea is able to detect more than 230 genetic diseases. In 2014*, Genea conducted 36% of all PGD embryo transfers across Australia and New Zealand, which resulted in 44% of all the PGD live births in the region.
At present PGD, does not attract any Medicare rebate and can add as much as $6000 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 submitted the application after watching the heartache suffered by patients desperate for a baby. "These families often have 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."
The announcement has been welcomed by couples such as Quinta and Greg Turton from Chifley, whose 26-day-old daughter Poppy died from Cystic fibrosis in 2008. The couple already had a healthy son, Finlay, and had no idea they were carriers for the Cystic fibrosis gene. “It was an incredibly difficult time for us. First, the devastation of losing a child and then coming to terms with the fact there was a one-in-four chance that any future baby we had would also have CF," Mrs Turton said.
After falling pregnant again, the couple made the decision to terminate the pregnancy when it was discovered that the baby was also affected by the CF gene. Thanks to PGD they were then able to conceive a healthy son, Angus.
"We will continue to do whatever we can to correct this inequity of access," Dr Stojanov said. "We are thrilled with MSAC’s recommendation, today is a momentous day, one that should be celebrated but we still have work to do and look forward to hearing Minister Hunt’s response."
Other counties including the United Kingdom, New Zealand, France and the Netherlands all provide some public subsidy for the medical procedure.
"Bringing a child into the world that needs to live in the hospital system costs the government a lot of money. 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," she said.
* According to the latest available data (2014) released September 2016 from the Australian and New Zealand Assisted Reproduction Database (ANZARD)