A guest post written by: Bob Piniewski, AJ’s Dad, organizer of PAC2
Children with cancer need your help.
I know because on Father’s Day 2007 my 14-year-old son Alex John was diagnosed with childhood cancer. On January 5, 2008, we lost AJ to childhood cancer. While I can’t begin to explain the horror of childhood cancer, please let me share some of what I’ve learned since.
September is National Childhood Cancer Awareness Month. This month and every month, nearly 1,200 moms will learn their child has cancer, and 1 in 5 of those mothers will lose their child to cancer, making cancer the #1 cause of death by disease for kids in the US. Kids' cancers are fundamentally different than adult cancers, and unfortunately, kids' cure rates have plateaued in the last two decades because the doctors have done as much as they can with existing drugs. Heartbreakingly, most of the kids who survive have long-term health effects like secondary cancers or major organ damage.
The impact of childhood cancer isn’t limited to the child and family, it extends across communities and the entire nation. Dr. Eugenie Kleinerman, Head of Pediatrics, Children's Cancer Hospital at MD Anderson Cancer Center described the societal impact this way: "Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved."
Yet most children with cancer depend on treatment options developed over 30 years ago, and astonishingly not one new drug has been introduced to treat childhood cancer in the last 20 years!
Can you guess the problem? Research into cures for childhood cancers is vastly underfunded!
Why is childhood cancer research underfunded?
Research funding for most adult diseases comes from two sources: the federal government through the National Institute of Health and industry through investment in drug development. Because kids don’t represent much profit opportunity, industry research is virtually non-existent. And even though the facts suggest a need for increased government funding, funds for childhood cancer research make up less than 4% of the National Cancer Institute’s budget. Would you want to explain to your child that it’s not profitable to find a cure?
Is 4% enough of an investment in the fight against the #1 killer disease of America’s children? Especially knowing that the chances a child will have cancer before age 20 are about 1 in 300?
Since funding doesn’t flow freely from industry or federal sources, childhood cancer-specific charities and foundations have historically led the charge to raise money for childhood cancer research. These groups, often parent led, sponsor events where supporters shave their heads, hold lemonade stands, organize walks & runs, sell cookies, and throw PJ parties.
There are literally hundreds of groups in the fight against childhood cancer. You see, childhood cancer is not a disease; it’s a group of patients, kids, all with different types of cancers: bone, muscle, brain, organ, and blood. Cancer kills kids randomly without regard for where you live, came from or do for a living. This wide variation makes organizing through a single entity, like the breast cancer population does through the Susan G. Komen Foundation, challenging.
Instead, these charities and the people that care the most about these kids—their parents and loved ones—each do what they can in their communities. Their individual missions are as varied as the children they help, but each brings unique passion and talents to the cause. Some work to fund research. Others raise awareness. Still others support the kids and families as they go through what is the most difficult trauma they’ve ever faced, fighting for their child’s life. While the diversity is incredible, they all serve the same patient population: kids with cancer.
Collaborative efforts against a common enemy
Having so many and such different groups in the fight has, at times, made it difficult for the childhood cancer community to identify and seize opportunities to work together. But, working together is crucial, as community leaders have come to realize. A thousand unified voices would exponentially raise awareness of childhood cancer, and building awareness is a crucial step towards increasing funding. Cooperation can also contribute directly to better research outcomes. The scale, cost and complexity of today’s research projects can easily exceed a single organization’s entire grant capabilities, but collaborative funding can accelerate more promising research projects.
To bring action to the idea of collaboration, over 30 childhood cancer organizations and numerous passionate advocates gathered in Washington, D.C in March 2011 at the first People Against Childhood Cancer (PAC2) Workshop to harness and focus the collective passion and talent within the broader childhood cancer community. The group took the first steps, and the initial collaborations have been ground-breaking.
One powerful result of this collaboration was a national childhood cancer Public Service Announcement and supporting KidsFightCancer.org website both launched this month. KidsFightCancer.org allows visitors to search, learn about, and support national and local organizations that are funding research, supporting kids and families, or helping to raise awareness.
Further, last week in Washington, D.C., three days of activities involving many organizations highlighted this important month. For the second year an amazing group of 46 mom’s of kids with cancer shaved their heads bald to raise funds for research. The 2nd Congressional Childhood Cancer Summit educated Congress about the challenges of childhood cancer as Dr. Peter Adamson, Chair of the Children’s Oncology Group, who treats 90% of children with cancer testified -- “A nationwide team of physicians, scientists, nurses, psychologists, and other health professionals is poised to fundamentally improve the outcomes for children with cancer.” The problem is they lack the funding.
As you see the childhood cancer community is working together and fighting for America’s children: children who have been taken by cancer, children who are fighting cancer and children who WILL be fighting cancer. We are a relatively small community, but just like the breast cancer community, the childhood cancer community needs your support.
--Bob Piniewski, AJ’s Dad, organizer of PAC2