First off I would like to thank Today Tonight and channel Seven for airing Dylan's story and for helping us get the message across to the government and educating the Australian public on the overseas funding criteria. A big hug and thank you to Phil, Andrea and Anna too.
I am still so heated about the Australian Health Minister’s statement saying “It would be irresponsible for the Commonwealth Government to fund unproven therapies that could put their lives at risk” How about in my opinion: I think it would be “irresponsible for the Commonwealth Government to allow any Australian child to die because the family could not afford treatment overseas that could potentially save them” I bet the Health Minister would think very differently if it was his child who had Neuroblastoma that didn’t respond to chemotherapy. Whether
I have received a few emails asking why 3F8 monoclonal antibodies are still in a clinical trial phase after 20 years if it has proven to have a significant impact on Neuroblastoma patient survival rates. I will try and answer this question as best I can, as I understand it. The answer is quite simply – Money and Liability – sad but true.
Money - 3F8 is specifically for Neuroblastoma and as far as I know it is not beneficial for any other cancers or illnesses. This being the case, for it to leave a clinical trial state, it would need to have a pharmaceutical company to put their name to it and manufacture it for world wide use. For the pharmaceutical company this would not be economically viable, they simply would not make enough money from such a project. There are approx 600 children diagnosed with Neuroblastoma every year in the
Liability – Pharmaceutical companies are always hesitant when taking on a pediatric cancer drug. In adults, lets say the majority of those diagnosed is 40 years of age, that means if they cure the adult with a drug, maybe that person will live an extra 40 years. Adults can also sign a liability document to waive the possible long term side effects. In pediatric patients (children) lets say they give a drug to a 2 year old child and cure them of cancer. That child may live another 80 years, this doubles the chances of a long term side effects happening in the future. 2 year olds cannot sign any liability documents, the parents make that decision and sign, but when that child becomes an adult they could sue the pharmaceutical company if that drug had a serious side effect in the future, say for example if they discovered 3F8 caused another illness like multiple sclerosis or something, 40 years after it was administered.
So this means that 3F8 will likely never be available outside of being a clinical trial even if it is perfected into an absolute cure for Neuroblastoma. Currently 8H9, another monoclonal antibody similar to 3F8 is proving to be a 100% cure rate for children who relapse with Neuroblastoma in the brain, and that is still a clinical trial even though so far it has been 100% successful in curing Neuroblastoma in the brain. MSKCC in
3F8 is not a cure, but MSKCC have the highest survival rate for Neuroblastoma than anywhere else in the world and that is a staggering result considering they get the hardest cases. What I mean by that is that most of their Neuroblastoma patients were treated elsewhere and they turn to
Sorry about the bitch session, but I want to explain more in depth to those interested as to why I get so mad with the funding issue.