Late last year, we made an application for Newborn Screening for Sickle Cell Disease to the Department of Health’s The Standing Committee on Screening. The application process required us to work with clinicians who researched on our behalf to answer the application’s different questions. We want to thank Dr Anthea Greenway and Dr Kongolo Kalumba, who helped us with the application process.  We were stunned at the price of this screening compared to other genetic diseases in Australia and the rest of the world. Just as an example for the same screening, the cost for HPLC has been reported in the USA and Germany between 2 – 6 US $ + costs Labour + Equipment. However, in Australia, the cost for HPLC ranges between 90 – 100 AU $. There were other quite intense questions that our scientific advisors did well to answer on our behalf. A sample of some of the questions asked is above.

While we made the application, we were disappointed to be informed that last year, the Government initiated a review of the Council of The Australian Structure and that The Department is working to identify alternate options. Response here:

“This year the Government has initiated a review of Council of Australian Governments structures and committees which has resulted in a decision for the Standing Committee on Screening (SCoS) to be disbanded.  In light of this, the process for providing policy advice to states and territories for their newborn screening programs will now need to be revised. The Department is working to identify alternative options for health technology assessment of potential additions to the NBS programs. The states and territories can still independently include or exclude conditions from their NBS programs. As each jurisdiction determines which conditions will be added to their programs”.

Considering this, we will continue to wait for the Department of Health and send reminders if they take longer to get back to us. Watch this space as we will update the outcome soon. We want to thank Rare Voices Australia, who helped us with understanding the application process