Spearheading Change in Cancer Research: The Pediatric Cancer Foundation’s Sunshine Project
By: Sumei FitzGerald
Cancer is the leading cause of disease-related death among American youth. One out of every 300 U.S. kids will develop cancer before their 20th birthday. Cancer treatment and its side effects lead to life-long chronic illness in 70 percent of the survivors and kill one in 20.
Yet, for every dollar breast cancer research receives, just 30 cents goes towards pediatric cancer study. That amounts to less than four percent of the $4.8 billion public funds paid out for cancer research last year. Profit-based private funding pays for over 60 percent of cancer research. Pediatric cancer makes up only one percent of all new cancer diagnoses, so adult treatments are the money-makers. That’s why pediatric cancer is referred to as “the orphaned disease.”
But kids are our future, points out Dr. Douglas Letson of the H. Lee Moffitt Cancer Center. Dr. William Evans of St. Jude’s agrees. “If you save the life of a 7-year-old, you have now saved 70-plus life years.”
Overall, the cancer research funding process discourages collaboration, rewards refinements in existing drugs rather than the development of new, squashes understanding of how cancer spreads and makes funding for doctors with novel ideas nearly impossible.
Nature reports that “The scientists who have found applications for their discoveries often say they did so despite the system, not because of it.” Former director of the National Cancer Institute Richard Klausner adds, “There is no conversation that I have ever had about the grant system that doesn’t have an incredible sense of consensus that it is not working. That is a terrible wasted opportunity for the scientists, patients, the nation and the world.” Childhood cancer survivor Clifton Leaf writes, “No, it isn’t just the patients in this war on cancer who need renewed hope. It is the foot soldiers as well.”
The Pediatric Cancer Foundation’s (PCF’s) Sunshine Project shines a ray of hope for children suffering pediatric cancer and the doctors committed to finding a cure. PCF isn’t waiting for the system to change; its spearheading changes in research and helping children now.
Founded by mothers of pediatric cancer survivors Melissa Helms and Risa Tramel, PCF funded seed grants for 15 years. Seed grants pay for basic research, the lab work that helps scientists find credence for their ideas. Helms realized that this wasn’t benefiting children with cancer in the here and now. She teamed up with Dr. Letson and the Moffitt Center in 2005 to form The Sunshine Project. The goal: bring the nation’s top doctors and scientists together to fast-track research for children battling cancer.
Traditionally, research is very linear, very one-way, says Dr. Letson. Most funding goes towards basic research on cell cultures. Then scientists must win grants for animal studies. After that, they must apply for and win funding for each phase of clinical trials 1-4. At any point in the process, conflicting or unanticipated results can send scientists back to the bench to start all over again. It can take 12-14 years for a treatment to reach market.
Translational research is a two-way street. Data from human trials inform and expand basic science. The altered science then shapes treatment. This process can lead to new insights, accidental discoveries and more effective results.
The Sunshine Project is the first of its kind: funding basic research, translational research and clinical trials all at the same time. Professionals from all over the country, from data analysts to doctors, come together as a virtual team with the help of the Moffitt Center’s comprehensive management. Trial data is compiled, analyzed and readily accessible at Moffitt. Moffitt also helps handle the funding, protocol criteria and endless paperwork that usually impedes research progress.
PCF is showing the scientific world that there is a different way to conduct research: research can be collaborative and cooperative, dynamic and innovative, systemic instead of splintered. It can be applied now.
The Sunshine Project has helped to fast track three new drugs into clinical trials in ten hospitals. Focus is on less toxic treatments and the 20% of pediatric cancers that are most virulent and for which traditional treatments have failed.
Mother of first-grader Emma, Suzan Harrison, can’t say enough about PCF. Their work is so crucial, she says, because it’s improving the quality of life for kids today. PCF gives families dealing with cancer agency, she adds, a way to combat the often-crushing sense of helplessness that accompanies a cancer diagnosis. Kids involved in these studies provide insights that become part of the solution.
Harrison cherishes how PCF provides community, support and empowerment for the kids while pursuing fundraising goals. “It never feels like the children are being exploited or used simply for exhibition,” she says. PCF’s events “bring the kids so much joy” while tackling the real challenges in research. “It’s one thing to donate money to a child’s wish foundation,” says Harrison, “and quite another to contribute to effective research for children.”
Emma enjoyed shaving the head of a local businessman in “Cuts for the Cure,” and the Saks Fifth Avenue Fashion Show was among her favorite events. She calls herself “glam” and says, “Leukemia’s really about friendship.”
With just five full-time employees, PCF has united friends of all kinds in the battle against cancer. The Sunshine Project lights the way for the future of all research.
To learn more, visit the Pediatric Cancer Foundation.
Help out by contacting your state representatives about the Creating Hope Act of 2010 (S.3697), the Better Pharmaceuticals for Children Act (BPC Act) and the Pediatric Research Equity Act (PREA).