The Situation

• In the US, cancer is the leading cause of death by disease among children between infancy and 15 years

• About 11,000 children and more than 70,000 adolescents and young adults are estimated to have been diagnosed with cancer in 2009

• One in four survivors are expected to die from recurrences of the original cancer or from non-cancer-related causes such as heart and respiratory

• Leukemia, brain and other central nervous system tumors account for over half of the cancers diagnosed

• Recent reports indicates that incidences of leukemia and brain cancer are on the rise in the younger populations.

• Despite improvements in five-year survival rates to between 75% and 80%, there continue to be myriad adverse events attributed to the current therapies provided

• Life threatening health issues are correlated to the toxic treatment regimens given to children when they were young

• Only about 25% of the survivors remain healthy, while the other 75% fall prey to second cancers, strokes, bone marrow depression, lung damage, weakened heart muscles, congestive heart failure, hearing loss, respiratory disorders, and even obesity

• Children who survive cancer therapies live, on an average, ten years less than the general population. For all types of pediatric cancers, decrease in life expectancy ranges from 4 (6% of kidney cancer survivors) to 17 years (28% of brain and bone marrow survivors)

• Most late effects are caused by chemotherapy or radiation that also damage the healthy cells

• Cancers of the young are more aggressive and progress more rapidly than cancers seen in older adults

• Today’s cancer treatments for our kids include blends of several adult drugs, referred to by some as the “kitchen sink” solution

 ”There is no defined protocol for diagnosing childhood cancer, so pathologists vary in levels of rigor in the testing they undertake. In cases in which they are less aggressive, there’s greater likelihood of misdiagnosis. There is no personalization of treatment approaches. Few therapies are tailored to them. Children are often treated with much higher doses of drugs that are designed for adults. They are extremely toxic. The result? Treatment is usually performed through trial and error leading to unnecessary pain and suffering because the treatment for each cancer is so different.”

Looking ahead: How personalized medicine
could change pediatric cancer treatment
PricewaterhouseCoopers
The View, Fall 2010

Childhood, adolescent and young adult cancers as a category are all considered rare diseases ( a condition affecting <200,000)  providing little economic motivation for investments and development. Commercial research and development laboratories cannot justify the taking on rare cancers because they do not make economic sense. Thus, Investment capital is channeled to larger markets. Needed diagnostic and treatment solutions for children, adolescents and young adults are not reaching the clinic. Solutions for solving rare diseases require a different model.

Share THE NEED with your friends

"Children have usually been considered just small adults in the medical profession. As a consequence, sick children, especially those suffering from catastrophic illnesses like cancer, have had to endure harsh treatments that have ravaged their developing bodies.  The Nicholas Conor Institute intends to focus on diagnostics and treatments designed specifically for each child that will allow them to grow normally and lead a happier life – that is why I have joined this admirable organization."   

                           -Robert M. Cohn, MPH