I am a pediatric brain cancer survivor.
Unlike every other age group over 18, pediatric cancer is unique because clinical care is based on an age range first and disease type second. On average, 5-year survival rates have skyrocketed from less than 10 percent in the 1950s to 85 percent today, with leukemia approaching 95 percent (source: National Cancer Institute SEER 2009). This inspiring progress is attributable, at least in part, to these age-appropriate standards of care.
In fact, so much progress has been made with so many children surviving into adolescence and young adulthood that attention began to shift to quality of life as a component of quality of care.
In 2003, the NCI released Childhood Cancer Survivorship: Improving Care And Quality Of Life. It was the first time the concept of moral imperative was suggested -- namely, when the pediatric oncologist says "You're cured, go home," the story does not end when the patient is discharged.
This report determined that there were approximately 270,000 long-term childhood survivors in the U.S. with most under the age of 40; a testament to progress. What's more interesting is that nearly two out of three suffered from serious medical issues and debilitating chronic conditions caused by the very cancer treatments that saved their lives in the first place. These unintended consequences included everything from infertility, osteopenia and diabetes to heart disease, cognitive impairment and secondary cancer. Even though no one prefers the alternative, the study showed that there are tradeoffs for surviving.
Recently, CureSearch, the world's largest children's cancer research collaborative, revised what "cure" means to their patient population. What used to refer to the very tangible "five-year survival" shifted to the more esoteric "assurance of psychosocial, educational, and occupational reintegration into a successful life."
If that's cure, when, if ever, are these kids cured? How does one determine when these measurements are met, if ever?
Tens of thousands of childhood cancer survivors age out of pediatrics each year, after which point they are largely cast into a healthcare system grossly unfamiliar with their unique medical, social, psychological, economic, emotional and spiritual needs. They subsequently face inadequate care and become even more underserved.
And while efforts have been made to recognize this gap as it pertains to clinical and psychosocial needs, too many long-term childhood survivors continue to age out with no "what's next" to help them start their college careers, socially reintegrate with dignity, understand their health risks, find age-appropriate peer support and navigate their lives as they enter the real world; in other words, to be cured by CureSearch's definition.
The blessing of turning 18 is almost a curse; an insult to injury because these patients come from a continuum of care that cocoons them every step of the way. Then, as a young adult, they get dumped into an antithetical system with no age-appropriate standards of care on how to transition from pediatrics to everyone else.
In 2006, the CDC and LIVESTRONG released Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. This report essentially gave birth to the young adult cancer movement by raising awareness about the clinical and social disparities facing patients and survivors in their late teens, 20s and 30s, including long-term pediatric cancer survivors. And while young adult is still technically a part of everyone else, it is differentiating itself significantly through outreach, advocacy and disruptive citizen uprising.
Today, the young adult survivorship community thrives while serving as the "what's next" for over 300,000 long-term childhood survivors who may be disease free but who certainly do not feel cured by any means. The very nature of this community is to "ensure a survivor's psychosocial, educational, and occupational reintegration into a successful life"; in other words, help them achieve cure.
Young adult cancer advocacy organizations are responsible for mainstreaming the CDC report and bringing the cause of young adult cancer to the national spotlight. They are each the little engines that could, filling a gap that no one else will touch, and with little or no financial assistance from the cure-focused general public.
So, what is the responsibility on the part of pediatric cancer foundations -- and the corporations who support them -- to ensure that the needs of children don't get ignored starting on the day they turn 18? Do these charities not owe it to these kids to ensure the continuity of their care and well-being when they age out and become young adults?
Where are the pediatric cancer foundations raising money for young adults? Has the time come for these charities to consider diversity in their philanthropy and to support the young adult world? Can they simultaneously fund critical pediatric research and patient services at the same time as the young adult patient service organizations that will take over as those children step into the next phase of their lives?
This is an appeal to all pediatric cancer foundations and major corporations who support pediatric cancer with socially responsible cause-related campaigns. Consider directing some of your funding to organizations that focus on the young adult community. They are the charities where abandoned long-term childhood cancer survivors go to seek social refuge amongst their peers, to navigate the unique issues they face, to engage in meaningful survivorship and find whatever their version of "cure" is. I should know. I'm one of them.
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