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 New York “cures” Dylan or not is irrelevant, New York has provided Dylan with an extra 2 ½ years of life and likely a few more years to come. As a parent that is my decision whether I wanted to bury my son in as little as 2 months in Australia or give him the opportunity to possibly live longer and be alive in case the “cure” is found during that time. His quality of life is remarkable, he looks and feels great, he does things most normal 8 year olds do and he has done things most people have never done in their lifetime. Ok now that I have that off my chest I feel a bit better LOL.
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 USA, and I assume the number world wide would be less than 2,000 diagnosed every year, so that means the company would sell 3F8 to 2,000 patients a year. With the current treatment for Neuroblastoma that is available in almost every country, they use chemotherapy that is not only used for Neuroblastoma but the very same chemotherapy agents are used for many other cancers, both pediatric and adult and for very common cancers. So at a guess at least a minimum of 2 million people are diagnosed with some kind of cancer every year, adults and children that they can sell the chemotherapy agents to, get the picture?
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 New York is not holding 3F8 from any other country from making it, they would gladly provide the knowledge for other countries to start up their own clinical trials, and some are, like in China. But again money is the issue. The governments in other countries like Australia do not fund enough towards pediatric cancer, they do not have specialized cancer hospitals. Let’s face it, health care is the first thing to get cut in government budgets. I don’t blame Australia, I know that the USA is a very rich country and therefore have more resources to fund such research, but if Australia cannot set up more funding or research to provide clinical trials then they MUST send these children overseas to have the treatments. I don’t know how to ever resolve the situation, maybe Australia could partially fund MSKCC for research and make some kind of deal to treat Australian children at a reduced fee. I know that regardless of Dylan’s outcome, I will set up Dylan’s fund into a foundation and continue to fund raise to help other children needing treatment overseas, not only for Neuroblastoma but for any life threatening condition that Australia cannot treat and other countries can. Right now my focus is on Dylan and getting through our own journey, but when the time comes, when our lives change again for better or worse, I will always have this issue close to my heart and provide a foundation to assist other families.
This is the reason why we have such good cure rates for cancers like leukemia and breast cancer, because it effects more people, causing more patients who need the drugs and therefore makes billions of dollars for Pharmaceutical companies. 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 MSKCC when they relapse or the other hospital can offer no more.
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.
