Newborn Bloodspot Screening Update: Changes to the Assessment Process for Nominated Conditions


The Department of Health has announced changes to the assessment process for nominated conditions conducted under the Newborn Bloodspot Screening (NBS) National Policy Framework (the Framework). Under the Framework, anyone in Australia can nominate a condition to be added or removed from NBS programs.

Moving forward, as stated on the Department of Health’s website:

When the Department receives a new application it will conduct an initial review and submit its findings to the Chief Medical Officer (CMO) for consideration. Should the CMO agree that the condition warrants a detailed review, he will advise the Health Chief Executives Forum (HCEF) and refer the assessment firstly to the NBS Program Management Committee for review against the population screening criteria. If this assessment is positive, it will then be referred to the Medical Services Advisory Committee (MSAC) for a Health Technology Assessment. Following receipt of the MSAC recommendation, the CMO will advise the HCEF of the outcome. The states and territories will then make decisions regarding implementation.”

Rare Voices Australia (RVA) has been highlighting the need for increased sustainability, equity and transparency for NBS for some time. RVA has conducted targeted advocacy at both the Commonwealth and state levels. Over the past nine months, RVA has engaged with the Hon. Greg Hunt MP, state Health Ministers, the national NBS Program Management Committee, state NBS programs and relevant rare disease organisations to ensure that this essential and successful screening program can evolve with advances in medical technology and provide equitable and consistent access to evidence-based screening for all Australian babies.

RVA welcomes the Department of Health’s reform which we believe will give the assessment component of the NBS program ongoing sustainability and encourage more timely implementation at a state level. RVA believes this will increase both equity and transparency in NBS programs. We are also pleased to see that the existing nomination process has been retained, enabling any interested party to put forward a nomination for assessment.

We thank Minister Hunt for his leadership on and commitment to this critical issue. RVA would also like to thank our rare disease partner organisations for working in partnership with us. We also thank states and territories for their ongoing engagement and commitment to NBS and look forward to working with them on timely implementation of future recommendations arising from this process.

RVA has arranged a meeting with the Department of Health to discuss the impact of these changes for all stakeholders and will share further information as it becomes available.

Click here to read more about NBS on the Department of Health’s website.


The Framework is designed to support the continued access of the NBS program by providing a robust, transparent process for national decisions on the conditions screened as part of the NBS program. RVA strongly supported the endorsement of the Framework in 2018, as it had the potential to further develop NBS in a consistent and equitable way across Australia. Unfortunately, despite the Framework’s many strengths, its implementation has been greatly impacted by funding gaps, resulting in uncertainty, inequity and delay across the country. This is clearly highlighted in the National Strategic Action Plan for Rare Diseases: Address urgent funding gaps associated with the effective implementation and sustained success of the Newborn Bloodspot Screening (NBS) National Policy Framework.

RVA’s advocacy for increased sustainability, equity and transparency

RVA has been highlighting these issues with the NBS for some time. In recent times, RVA has conducted targeted advocacy at both Commonwealth and state levels. We have communicated regularly with Minister Hunt’s office and Health Ministers’ offices in all states/territories and with other key stakeholders.

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