I get asked this a lot and I think Band of Parents explained it best on their website...here is a copy...
Why is there no effective treatment for advanced neuroblastoma? The answer is simple and devastating: there is not enough money for research. Yet, consider this - since the 1950s the rate of children surviving leukemia shot from 10% to 80%. Similarly, the survival rates for other types of cancers, like breast cancer for example, have also improved significantly thanks to extensive research that developed innovative and less invasive treatment options. In contrast, children diagnosed with cancer are faced with woefully inadequate funding from the government – and a lack of interest from the pharmaceutical industry, because orphan diseases like neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little to no incentive to develop treatments. Children diagnosed with neuroblastoma deserve better odds of survival on par with most other cancers. Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But pediatric cancers collectively receive less than 3% of the National Cancer Institutes $3.1 billion dollar annual funded research portfolio of 2009 (more). For every dollar spent on a patient with breast cancer, less than 3 cents is spent on a child with cancer. Aren’t children our most precious resource? How can you put a price on a child’s life?
