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Thank you for your recent article on National Breast Cancer Awareness Month. It made me wonder why a similar focused effort has not developed to address cancer that attacks children. – Barbara G., Pennsylvania
As noted in an earlier column, National Breast Cancer Awareness Month is one of the most successful charity campaigns ever mounted. I haven’t seen totals yet as to the amount of funding generated this year, but according to American Cancer Society figures, corporate supporters Chevrolet and Lady Foot Locker alone have generated approximately $2.5 million toward the effort.
The point you make is one that comes up consistently. What will it take to beat cancer across the board, and how can we ensure that needed funding is allocated as widely as possible? According to the National Cancer Institute, cancer is the leading cause of death by disease among U.S. children between infancy and age 15. Despite this fact, childhood cancer research is considered to be significantly underfunded. Of the hundreds of millions of dollars raised by large cancer charities, the National Cancer Institute estimates that only approximately 1 to 3 percent of this funding will go to pediatric cancer research.
I was reminded recently of this troubling situation by a letter I received from Frank Kalman, the founder and executive director of the Kids’ Cancer Research Foundation. In the winter of 2001, Kalman’s 12-year-old daughter, Callie, was diagnosed with neuroblastoma, a form of cancer most commonly diagnosed in infants. It accounts for about 7 percent of cancers in children. It is extremely difficult to diagnose, and once diagnosed, its progression is often rapid and extremely painful. Neuroblastoma is said to be responsible for more than 15 percent of cancer deaths in children. Once his daughter was diagnosed, Kalman writes, the fight was on to keep Callie alive. She has relapsed four times and had three major surgeries and more than 100 weeks of chemotherapy. At age 23, she is a survivor, yet still at risk and still on chemo today.
During his 10-year struggle to find a cure for Callie, Kalman and his wife visited all of the top cancer facilities across the country, and they connected with many of the top medical personnel who research and treat neuroblastoma. It was through this experience that he started his foundation. It also was based on his growing outrage that cancer research – the key to a child’s survival – is seriously underfunded. Kalman points out that the phrase “no child left behind” doesn’t apply in the pediatric cancer world. Pediatric cancer, especially neuroblastoma, can not only rob a family of the life of a child, but also push a family to its emotional and financial limits. Financial ruin is not uncommon.
Kalman also points out that some of the most critical decisions in treatment are made upfront, when parents who are new to neuroblastoma know the least. There are only a handful of medical institutions in the country that really know how to handle this disease, he adds. Young families new to the disease may not be aware of this for months.
“I have met so many families that have gone to the wrong facilities only to find out later that their child was given the wrong chemo or, worse, they lost their child,” he says.
Though research in pediatric cancer has historically been underfunded, pediatric cancer investigators have been on the cutting edge of cancer treatments and cures for decades. In addition, many of the principles of therapy used in treating adults with cancer were first tested and developed at the pediatric level.
Yet pediatric cancer investigators must spend a great portion of their time sniffing out funding for their projects, which takes them away from the research lab.
Says Kalman: “At the last conference I attended, I was approached, on three separate occasions, by three brilliant doctors peddling their research as though they were selling magazine subscriptions – looking for funding from small foundations like ours.”
One leading investigator told him that his work toward cures and better treatments would not exist if it weren’t for parent-driven foundations such as the Kids’ Cancer Research Foundation.
“Today, polio has been eradicated in the U.S. and in more than 200 countries, according to the World Health Organization,” writes Forbes senior editor Helen Jonsen in a 2008 opinion piece. “That should be a lesson as to how far a little philanthropy can go.”
Jonsen points out that it often takes one person’s passion, born out of pain, to raise awareness and start a movement: “Cancer is the No. 1 disease killer of children in the U.S. and the second overall killer of children, behind car accidents. We tend to talk about it in hushed tones instead of screaming for help. But scream we should.”
Write to Chuck Norris with your questions about health and fitness. Follow Chuck Norris through his official social media sites, on Twitter @chucknorris and Facebook’s “Official Chuck Norris Page.” He blogs at ChuckNorrisNews.blogspot.com.