The international TSC surveillance guidelines recommend magnetic resonance imaging (MRI) of the abdomen to check for possible renal angiomyolipomas (AMLs) or cysts. In Australia, the high out of pocket costs of an MRI make it difficult for many people with TSC to access this recommended screening test. TSA is working with a team of health professionals and Rare Voices Australia (the peak advocacy body for rare diseases) to advocate for a medical benefits scheme (MBS) item number for abdominal MRI for TSC screening. If successful, this would provide funding for abdominal MRIs, making them free to access through bulk billing services for people with TSC.
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