The Medical Services Advisory Committee (MSAC) has published the successful outcome of Application No. 1702 – Abdominal MRI for rare genetic conditions associated with increased risk of renal tumours. This will result in abdominal magnetic resonance imaging (MRI) scans being bulk billed for people living with tuberous sclerosis complex (TSC). Access to bulk billing for MRIs allows the clinical management of TSC to align with international guidelines. View the Public Summary Document on MSAC’s website.
Rare Voices Australia (RVA) led this successful application and worked in collaboration with RVA Partner, Tuberous Sclerosis Australia (TSA). We congratulate TSA and their community on this positive outcome! RVA thanks leading nephrologists, Dr Matthew Sypek and Associate Professor Kathy Nicholls, for providing clinical expertise for this consumer-group initiated application.
Learnings for the rare disease community
As the national peak body for Australians living with a rare disease, RVA’s work is non-disease specific and is based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems. RVA used this process as an opportunity to better understand how rare disease groups/organisations can lead their own future submissions. We will share our learnings with RVA Partner groups/organisations as soon as possible.