“There is something surreal about reading the obituary of a child who never had a chance to start first grade. Death comes to us all, but when a cancer diagnosis leaves a kid with less than a year to live because there’s no hope for a cure, the futility becomes overwhelming.”
In late July, a friend of Laura Colarusso lost his six year old son to a rare brain tumour. The little boy who once loved dinosaurs and Legos, spent the last seven months of his life undergoing intense radiation and steroids that left his body swollen and immobile. After watching the boys devastating journey on social media Laura was inspired to donate to one of the hundreds of well-regarded paediatric cancer foundations in the United States.
In the United States, the majority of cancer research funds go toward fighting adult diseases. Of the annual $5 billion budget for the National Cancer Institutes, only 4% is spent on projects that are specifically aimed at fighting childhood cancers. This incredible lack of government funding means that it is up to private charities to fill in the gaps. “Philanthropic support is astronomically important, to the point that if families and foundations don’t raise the money, the research wouldn’t happen,” said Dr Mark Kieran, director of the paediatric neuro-oncology program at Dana-Farber.
Childhood cancers are rare in the US, there is an estimated 15 000 cases diagnosed each year. These smaller numbers are encouraging but can make the diseases harder to fight. A smaller number of patient’s means there is a smaller pool for clinical trials and there is less of an incentive for drug companies to develop therapies that could prolong the child’s life. Another issue that has presented itself is that most cancer drugs are developed for adults and then approved for use in children. This is an unsustainable solution because children’s bodies aren’t fully developed and break down these medications differently. The bar for developing treatments for childhood cancer has been set very high, as a result there have only been a handful of new drugs created specifically for paediatric cancer since the 1980’s.
Researchers have made tremendous progress with certain types of childhood cancers like acute lymphoblastic leukaemia, however little progress has been made in other areas where doctors must still rely on the same practices that were used 15 to 20 years ago. To read this full article, click here.
This article originally appeared on ehospice – International Children’s edition.