Hi Bev,
Perhaps you can reach out to Dr. Trahir in Sydney Children’s Hospital. He heads the SIOPEN group for Australia and perhaps some discussion can be opened between SIOPEN and COG (the body you are treated under) to provide you with antibody via the SIOPEN study.
Looking at this huge, and unfair situation there are a few angles I think we can take. Any angle is going to require some fundraising and media.
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First and foremost SIOPEN and COG need to discuss this situation and update us all on the plan for Australian / NZ COG patients. Best people to discuss this are Dr. Trahir and Dr. Park. We need to get a public statement out there from both ASAP.
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Ideal outcome would be for SIOPEN to provide the drug to COG for all the Australian and NZ diagnosed children, this would be simplest and involve the least amount of disruption for families.
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If you are able to raise funds to be treated in the US there are quite a few options. You could go to CHOP or some other COG hospital and continue your protocol there. You could go to Sloan and get the humanized 3F8 antibody under their trial. Unfortunately this option is extremely costly and would require you relocate to the US for an extended period of time (at least 6 months)
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Consider Europe (Germany) for antibody. I think healthcare is much simpler there and mostly covered by the government. I don’t know exact details but it is worth investigating.
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It is getting a bit late you, but other newly diagnosed children could possibly benefit if 2M USD was raised for Dr. Alice Yu, she could mount a trial for her vaccine in less than a year. It is possible Dr. Lode could also do something like this as well. If there was a vaccine trial available it could become an alternative longer term. And may, or may not be a substitute for antibody. (it would be a phase 1 trial so this is a long shot)
I would love to do whatever I can to help, feel free to message me or update this topic with any updates you have.