Inquest into the Death of Child SJC (Name Subject to Suppression Order)
Deceased
Child SJC
Demographics
2y, female
Date of death
2017-11-20
Finding date
2020-07-01
Cause of death
Complications relating to metastatic neuroblastoma
AI-generated summary
A 2-year-old girl with Stage IV high-risk neuroblastoma (N-myc positive) received intensive, world-class treatment including chemotherapy, surgery, mega-therapy, radiotherapy, and biotherapy at Princess Margaret Hospital. She initially achieved remission but relapsed after 7 months. Dinutuximab immunotherapy, considered standard care, was unavailable due to global supply shortages until approval was obtained in July 2017—one week before relapse occurred. Despite subsequent treatment with Dinutuximab Beta, tumours continued to progress. The child died from metastatic neuroblastoma complications while under state care and receiving palliative hospice services. The coroner found medical care was of high standard and that earlier Dinutuximab access would likely not have altered the outcome given the aggressive disease course and poor response to immunotherapy at relapse.
AI-generated summary and tagging — may contain inaccuracies; refer to original finding for legal purposes.
Clinical conditions
Contributing factors
- Stage IV high-risk neuroblastoma with N-myc amplification
- Aggressive disease biology with early relapse
- Poor response to immunotherapy at relapse
- Global shortage of Dinutuximab limiting access to standard immunotherapy
- Delay in approval process for Dinutuximab Beta (April to July 2017)
Coroner's recommendations
- Perth Children's Hospital, supported by the Western Australian Department of Health, should use every means at its disposal to lobby for Dinutuximab to be placed on the Pharmaceutical Benefits Scheme (PBS)
- The Federal Minister for Health should give favourable consideration to placing Dinutuximab on the PBS
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