Children's Medical Tourism Network Workshop, Melbourne 2024

Melbourne Australia
Deakin University

Child Medical Tourism Network Workshop: Melbourne Australia

19 September 2024

 

This workshop was hosted by Deakin University, School of Law and held at the Deakin Downtown Campus in the City. The workshop was a day-long event organised and chaired by A/Prof Neera Bhatia (CO-CI on the UK Arts and Humanities Research Council Grant).

The workshop ran from 10am – 4pm and was followed by dinner for the attendees to network further.  The workshop was a hybrid event comprising in-person attendance and online (via zoom) given the time difference for some of the attendees.

The workshop was attended by national (including inter-state) network members and international members listed below:

In Person

  • A/Prof Neera Bhatia – Chair (Deakin University, School of Law, Melbourne)
  • Dr Paulina Fishman - (Deakin University, School of Law, Melbourne)
  • Lucy Jones – (CEO Neuroblastoma Australia, New South Wales)
  •  Briahna Connolly – (Solicitor, Barry Nilsson, Queensland)
  • A/Prof Mianna Lotz – (Dept of Philosophy, Macquarie University, New South Wales)
  • Jelena Magic – (Parent with lived experience, Melbourne)
  • Dr Yingyi Luo – (Research Fellow, Melbourne Law School)

Online

  • Katherine Jones - (Elemental Solutions, parent with lived experience, Melbourne)
  • Dr Giles Birchley - (Centre for Ethics in Medicine, University of Bristol (CO-CI on funded project and Child Medical Tourism Network Lead)
  • Donna Ludwinski - (Family Support Advocate, Solving Kids Cancer, New York, USA)
  • Anne Preisz - (Sydney Children’s Hospital Network, New South Wales, Clinical Ethicist)
  • Dr Fiona Miles - (Paediatric Intensivist, Auckland Regional Public Health Service, New Zealand) 
  • A/Prof Helen Irving – (Clinical Lead, Centre Children's Health Ethics and Law, University of Queensland)
  • Dr John Lantos - (Paediatrician and medical ethics expert, USA)

After the morning welcome and introductions and the agenda for the day was circulated the following presentations were given:

  • Why parents with children with neuroblastoma travel overseas for treatment - Lucy Jones
  • Ethical issues raised by children’s medical travel - Associate Professor Mianna Lotz
  • Parents travelling for treatment for sick children: Out of Pocket Costs and fundraising - Katherine Grace
  • Navigating Hope: Chasing Marko's Cure Amidst a Global Pandemic - Jelena Magic
  • Hope or harm - when parents fly their child out of the therapeutic 'nest' to seek a miracle cure (Via Zoom) -  Anne Preisz
  • Where is the evidence for the globalisation of children’s medicine? (Via Zoom) - Dr Giles Birchley
  • Reflections & Closing remarks - A/Prof Neera Bhatia

Throughout the day and after each presentation there was an opportunity for Q&A that was taken up and resulted in rich conversation.

Action items and discussion points at the end of the workshop included a discussion about a paper that involved parental lived experiences of travelling with sick children for treatment and a greater focus on government law reform submissions to make travelling overseas for treatment with sick children an issue that gained greater government support in Australia and New Zealand. Parents involved in the workshop stated that an obstacle they tended to face was a lack of government support to travel overseas for treatment and they had been compelled to build their networks and funding through GoFundMe pages. One presentation, went on to discuss the perils of using GoFundMe pages and the need for greater federal and state support.