Mal Washer (Moore, Liberal Party) Share this | Link to this | Hansard source

I recently met representatives from a fertility and stem cell research company, Genea, who brought to my attention the extraordinary difficulties faced by couples with serious genetic disorders who wish to have healthy children. These are couples who are carriers of a genetic disease which is disabling and has no prevention or cure—conditions such as cystic fibrosis, muscular dystrophy and Huntington's disease, to name a few.

As some members would be aware, couples who want to avoid passing on such disorders to their children can face terrible choices and decisions. Some will choose to undergo prenatal genetic tests during pregnancy and, on discovery of a serious genetic condition, termination of pregnancy. It is not uncommon for a couple to undergo more than one cycle of testing and termination before conceiving a child free of a genetic condition. Other couples will try to adopt or just give up on having children.

However, for the past decade or so, couples with enough money have been able to use an advanced medical procedure called preimplantation genetic diagnosis, or PGD, in combination with IVF services. PGD allows couples to screen their embryos for a genetic disorder and select an embryo free of the disorder for implantation. PGD can detect well over 100 serious genetic conditions—from the well-known disorders I mentioned earlier, such as cystic fibrosis, through to diseases such as Fragile X, which is thought to be the main genetic cause of autism, and juvenile retinoschisis, which leads to a progressive loss of vision in male carriers.

One couple to have experienced the grief and heartache of genetic disease is Tracy and Warren Taprell of Queensland. Both are carriers of Leigh's disease, a neurometabolic disorder which affects the central nervous system, and they have a one in four chance of passing on the disorder to their offspring. Sadly their late son Dion inherited the disease and died at three years of age. Not long after the death of Dion, Tracy discovered she was pregnant, but a prenatal test at 14 weeks called chorionic villus sampling showed the baby had inherited Leigh's disease. Almost a year to the day after Tracy lost her son Dion, she made the harrowing decision to end the pregnancy. The couple was determined not to have to go through this again, so they turned to PGD. Tracy underwent an IVF cycle with PGD testing and was implanted with an embryo free of Leigh's disease, giving birth to a healthy baby boy called Levi in November 2011.

Reaching this point has, however, been a terrible financial struggle for Tracy and Warren. They were on carer and disability payments while caring for their late son Dion and have had to scrape and save to pay for PGD treatment. While Medicare funding is available for genetic tests during pregnancy, Medicare funding is not provided for genetic tests, such as PGD, prior to pregnancy. It is illogical and has a devastating impact on couples like Tracy and Warren. They are just one of many Australian couples with known genetic diseases whose lives would be made better if PGD were partly subsidised by Medicare.

Australians like to think we have one of the world's leading universal health systems, but we are not keeping pace with other countries when it comes to public funding for PGD—the United Kingdom, New Zealand, France and the Netherlands all provide some public subsidy for the medical procedure. PGD is not a new and untested treatment. It is a standard medical procedure and has been available in Australia for over a decade, so the time has well and truly come to provide Medicare coverage. The time is well overdue for us as parliamentarians to recognise we are failing to properly help couples with serious genetic diseases.