Wednesday, 3 April 2019
Australian Institute of Health and Welfare Amendment (Assisted Reproductive Treatment Statistics) Bill 2019; Second Reading
That this bill be now read a second time.
I seek leave to table an explanatory memorandum relating to the bill.
I table the explanatory memorandum and seek leave to have the second reading speech incorporated in Hansard.
The speech read as follows—
IVF is an industry that needs more scrutiny. It's heavily propped up by taxpayers, but is somehow allowed to operate without full public transparency.
This bill provides consumers with access to objective and consistent information about the performance of assisted reproductive technology (ART) centres, in order to help them make an informed choice about their prospective treatment facility.
One in six Australian couples struggle to fall pregnant, which means most of us know someone who has gone through the exhausting rollercoaster of IVF.
There were 311,104 births in Australia in 2016, of which 13,596 were through assisted reproductive technologies such as IVF.
The technology is miraculous, but the process can also be emotional, heartbreaking and very expensive. Couples desperate for a child will often hand over thousands of dollars for each attempt but, at the moment, they are doing it with very few facts to go on.
Their choice of specialist or clinic might be decided by reputation, GP referral, online reviews or the recommendations of friends. The decision won't be made on objective and transparent information about the clinic's performance because this information is currently hidden from the public. This turns an important life decision into a lottery and needs to change.
We need full disclosure about clinic performance. It is our right not only as consumers, but also as taxpayers who pour an enormous amount of money into Medicare and the Pharmaceutical Benefits Scheme.
This bill amends the Australian Institute of Health and Welfare Act 1987to require all accredited fertility clinics to provide the Australian Institute of Health and Welfare (AIHW) with data on how many women underwent procedures at the clinic, which assisted reproductive treatments they received, the age of each woman, the number of resulting clinical pregnancies, and—most importantly—the number of resulting live births.
In 2016, the ACCC took IVF clinics to task for publishing misleading claims about their success rates—such as using their higher clinical pregnancy rates rather than live birth rates.
Some have since lifted their game, but it is still up to clinics to determine what data they publish, if at all—and even then the published data may be incomplete or selective.
Fertility clinics already report annually to the Australian and New Zealand Assisted Reproduction Database (ANZARD), resulting in the annual 'assisted reproductive technology in Australia and New Zealand' report, so the preparation and reporting of performance data is not expected to be an onerous task for them.
The database is a collaboration between the University of New South Wales' National Perinatal Epidemiology and Statistics Unit (NPESU)—a unit which has been tasked by AIHW to collect other statistics, such as national perinatal data—and fertility clinics, and is funded by the Fertility Society of Australia.
This annual report is of limited use for consumers as it only provides a national overview of assisted reproduction treatment outcomes.
However, it does show there is significant variability in clinic success rates. According to the most recent results from 2016, live birth rates varied from 11.6 per cent for the worst performer to 32 per cent for the top performing clinic. Half of the fertility clinics surveyed sat in the 17-24 per cent range. There was a similar result in 2015.
While a clinic's patient demographics (such as average maternal age and causes of infertility) will have some bearing on these results, it illustrates that a woman's chance of taking home a baby will vary substantially depending on which clinic doors she walks through.
In 2015, Richard Henshaw, a senior fertility expert at one of the larger groups, told the ABC that clinics in the top 25th percentile cost Medicare around $2 million to produce 100 live births, whereas clinics in the bottom 25th percentile cost Medicare three times that amount to produce the same result.
Medicare subsidises just under half of the approximately $10,000 cost for a first IVF cycle and the associated medication is heavily subsidised on the Pharmaceutical Benefits Scheme. Given the investment from taxpayers, it is only reasonable to pin some performance reporting obligations to this funding.
The industry in Australia would have us believe it is too difficult to publish standardised clinic success rates because there are too many variables in assisted reproductive technology. That argument doesn't hold water.
We know from overseas examples that comprehensive public reporting is completely achievable. The US has been doing it since 1992. It has a fantastic ART Success Rates database, published by the Centers for Disease Control and Prevention (CDC), which currently outlines the performance of 463 clinics.
The CDC database can be searched by location and clinic name, with each facility reporting the total number of cycles, pregnancies and live births. Success rates are given according to a woman's age, and the information can be filtered according to treatment type and diagnosis, which allows a woman to put the data in context and find a clinic to suit her circumstances.
The US took this route to help avoid the exploitation of infertile couples and to allow for 'unethical practitioners' to be exposed.
Why shouldn't infertile Australians have the exact same thing? There is absolutely no reason I can see—other than to protect a highly profitable industry happy to thrive on client ignorance and trust.
This is not about publishing 'league tables' but about giving consumers the facts they need to make informed choices about their treatment.
As consumers we have the power to research most things before we make a decision to buy or employ a service—even for something as trivial as a new appliance—so why shouldn't we also be able to do it when making some of the most important decisions of our lives?
I seek leave to continue my remarks later.
Leave granted; debate adjourned.