NeuroEndocrine Cancer Australia (NECA) welcomes the Pharmaceutical Benefits Scheme (PBS) listing of Selpercatinib (Retevmo) for eligible Australians living with advanced or metastatic medullary thyroid cancer (MTC) with RET mutation effective from 1 August 2026.
Medullary thyroid cancer is a rare neuroendocrine cancer arising from the parafollicular (C) cells of the thyroid. Approximately 25% of cases are hereditary, most commonly associated with germline pathogenic variants in the RET gene as part of Multiple Endocrine Neoplasia type 2 (MEN2). For patients with advanced or metastatic disease, treatment options have historically been very limited.
The PBS listing represents a significant milestone for Australians diagnosed with MTC with a RET mutation, providing affordable access to a highly targeted treatment that was previously associated with substantial out-of-pocket costs for many patients.
Alongside the PBS listing, new Medicare arrangements will provide funded tumour tissue testing for RET variant status in people with MTC, helping to determine eligibility for this treatment. This removes a further barrier that has historically stood between patients and the therapies that could help them.
NECA CEO Meredith Cummins said the listing marked the culmination of years of advocacy by the organisation, patients and their families.
NECA is so pleased to know that as of August 1, Retevmo (Selpercatinib) has been listed on the PBS for the treatment of advanced or metastatic MTC with a RET mutation, also, there are new Medicare arrangements for patients with MTC who will be able to undergo genetic testing at no cost to confirm eligibility for treatment. The MBS item code for RET gene testing is 73331.
Clinton, who lives with MTC and has been a leading advocate for improved treatment access, welcomed the news.
Thanks to the strong advocacy of some kind and dedicated people, including NECA, a successful outcome has been reached for not just myself but anyone who needs access to this life-saving and life-changing medication, Clinton said. Affordable access to the medication I need will allow me to continue working and providing for my family, and being there for those important milestones that mean so much to me as a father and husband.
The listing follows sustained advocacy from NECA and patient advocates, including a visit to Parliament House in Canberra earlier this year, where NECA joined Clinton and his mother Debbie to meet with Federal MPs and advisors and raise awareness of the lack of PBS access to Selpercatinib.
At the time, NECA warned that without PBS listing, treatment could cost patients thousands of dollars per course, placing significant financial strain on families already navigating a cancer diagnosis. The organisation urged that if the Pharmaceutical Benefits Advisory Committee (PBAC) made a positive recommendation, swift action should follow to ensure patients were not left waiting or facing life-limiting delays in treatment.
With the listing now in effect, eligible patients can access Selpercatinib at a fraction of its previous cost, alongside Medicare funded tumour testing helping to remove the cost barrier to determining RET variant status.
NECA thanks Clinton and his mother Debbie, along with the other patient advocates and families who shared their stories, as well as the parliamentarians, advisors and clinicians who supported this outcome. NECA will continue advocating for equitable access to treatment for all Australians living with neuroendocrine cancers.
For more information about medullary thyroid cancer, visit neuroendocrine.org.au.
