On 11 November 2022, at Rare Voices Australia’s (RVA) National Rare Disease Summit, the Hon Mark Butler MP, Minister for Health and Aged Care, announced a public consultation on the expansion of newborn bloodspot screening (NBS). This announcement followed the Australian Government’s commitment to invest $39 million over four years to expand NBS to include more conditions and ensure consistency of programs across Australia. Historically, NBS programs have been funded and implemented at a state government level. RVA welcomes the commitment and investment by the Commonwealth into this critical program.
Why this is important
Australia’s NBS program is important for the rare disease community as the majority of conditions currently screened, and being considered for screening, are rare conditions. NBS is an important program that supports the earliest possible diagnosis of some rare diseases. As outlined in the National Strategic Action Plan for Rare Diseases, early diagnosis is critical for better outcomes as it enables the best immediate treatment and care. The rare disease community has been calling for increased equity, timeliness and consistency of screening for many years. As the national peak body for Australians living with a rare disease, RVA has been highlighting the need for increased sustainability, equity, transparency and consistency of screening for NBS for some time. RVA has conducted targeted advocacy at both the Commonwealth and state levels over the last two years. We also acknowledge the advocacy of our RVA Partner organisations and the broader rare disease sector.
Developing your submission
This consultation is an opportunity for stakeholders to lodge their input into NBS policy decisions. RVA has developed this resource to provide RVA Partner organisations, and the broader rare disease sector, with prompts that may assist in the development of a submission. Not all prompts will be relevant for all submissions.
RVA Partners can also access customised mentoring support by contacting Louise Healy, RVA’s Education and Advocacy Manager: firstname.lastname@example.org.