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With no Medicare rebate, financial barriers are preventing many pregnant people from accessing non-invasive screening for common genetic conditions.
An average out-of-pocket cost of $400–500 is the main barrier to equitable delivery of non-invasive prenatal testing in Australia.
Non-invasive prenatal testing (NIPT) is recognised as the most accurate screening test for genetic conditions, but it currently has no Medicare rebate.
New Australian research suggests financial barriers are contributing to disparities in equal access for prenatal testing for common genetic conditions, such as Down syndrome.
Led by Monash University, the study surveyed healthcare professionals providing NIPT – including obstetricians, GPs, midwives, and genetic specialists – the first of its kind to survey a wider cross-section of healthcare professionals, rather than just obstetricians.
It found substantial variation in prenatal screening, with healthcare professionals reporting ongoing challenges in providing equitable access and pretest counselling.
While most recommend NIPT to their pregnant patients, the findings show that out-of-pocket costs are the number one (94.1%) barrier to accessing the tests.
Lead author Dr Molly Johnston from the Monash Bioethics Centre said the findings highlight a need for better understanding of gaps in care.
‘Lack of knowledge around the test, increasing time demands on healthcare professionals and cost barriers are having an impact on the equitable provision of prenatal screening,’ she said.
‘The provision of NIPT as well as genetic counselling often falls to a wide range of healthcare professionals, including those in general practice.
‘Current Medicare structures encourage short appointments in general practice, which are not conducive to the comprehensive counselling needed, particularly following a high-chance test result.’
In Australia, pregnant people can choose to have a screening test to detect common genetic conditions, such as Down syndrome, in their unborn baby. In November last year a new Medicare item was introduced to cover cystic fibrosis, spinal muscular atrophy and fragile X syndrome testing during pregnancy.
But NIPT is not currently covered by Medicare, with patients required to pay $400–500 out of pocket to access the test. First offered in Australia in 2012, healthcare providers have reported concerns with the financial barriers to access NIPT – typically the most expensive prenatal screening test and the only one not subsidised by Medicare.
The Monash study confirms that healthcare providers are still reporting ongoing challenges with providing NIPT, with concerns that variation in public funding is leading to inequitable access, particularly for those in low socioeconomic areas and rural or remote communities.
Adequacy of pre- and post-test counselling, time constraints and the need for more funding were all reported as key concerns by healthcare providers.
For patients, after out-of-pocket costs, a lack awareness accounted for 31.6% of barriers to access, while healthcare providers not informing patients of the option accounted for 26.7%, the research found.
Co-author and maternal foetal medicine and genomics specialist, University of Melbourne Professor Lisa Hui, said it is important healthcare providers enable informed choices for their pregnant patients about screening options.
‘When patients are not given the choice between expanded and basic NIPT, they are not given an opportunity to determine how much they want to know about their pregnancy,’ she said.
The study also identified disparities in who the test is offered to, with providers in private practices or metropolitan areas more likely to suggest screening to all pregnant patients than those in the public sector and working in regional and remote areas.
Only 37.4% of healthcare providers stated they either do not, or infrequently, offer expanded NIPT due to limited consult time or a lack of knowledge of available options, further contributing to varied provision of NIPT.
To ensure Australian patients continue to receive the optimal standard of antenatal care, the researchers recommend standardising offers of types of NIPT and decreasing cost barriers for patients, such as introducing a Medicare subsidy.
Additionally, they say it is necessary to increase education, time, and resources for healthcare professionals seeking to offer genetic counselling and reviewing.
The RACGP’s ‘Genomics in general practice’ is a comprehensive clinical guideline for GPs to assess and manage common genetic conditions.
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access to care antenatal care financial barriers genetic carrier screening genetics pregnancy prenatal testing