Statistics usually form the basis of awareness campaigns.
Rates of incidence, survival and mortality are humanised through personal stories, such as a child’s formative years given over to harsh and extended treatment cycles, or of a family grieving the loss of a child gone too soon.
What is rarely mentioned however are the incompatibilities of childhood cancer with the everyday expectations of social, cultural and economic life.
How many parents or guardians lose the ability to work? What percentage of the family income is lost? How much travel time is spent accessing treatments? How many relationships dissolve? How many careers are ended? What are the impacts on mental health?
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....