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PPI | Policy Report | September 2, 2008
Conquering Childhood Cancer
By Andrea Northup, Kunal Kothari, and David B. Kendall


Editor's Note: The full text of this policy report (which includes endnotes) is available in Adobe PDF format, only. (Requires Adobe Acrobat Reader.)

The war on cancer has failed our children. Since President Nixon's famous 1971 declaration of a national effort against all forms of cancer, the number of childhood cases diagnosed each year has risen steadily. Despite substantial advances in treatment, cancer remains the leading cause of death by disease among children. More children are being diagnosed with deadly cancers with each passing year, while cancer rates for adults have declined since their peak in 1992.

Childhood cancer incidence overall has risen by 33 percent since Nixon's declaration; brain and other nervous-system cancers in young children have increased by over 50 percent; and the incidence of non-Hodgkin's lymphoma in teenagers has more than doubled.

The prospects for the future are not good either. Scientists only began to take note of these trends in the late 1990s, and a decade later, researchers are stumped as to what is causing these sustained increases in childhood cancer incidence rates. The disease is difficult to study because its causes are generally unknown and the possibilities present a complex puzzle.

The rising cancer rates are just one indicator of broader trends affecting children's health. Autism rates in this decade are tenfold more than in previous decades, and childhood obesity rates have tripled since the 1970s. Many other child health problems are also worsening, including low birth weight, asthma, allergies, diabetes, and mental health disorders.

While doctors have been increasingly successful in treating many childhood cancers, we lack a clear understanding of what lies at the root of these increases in disease rates. The causes are widely unknown because we are studying disease late in its course, in an uncoordinated fashion, and using surveillance that is incomplete or non-existent.

The nation needs a systematic effort to stop the rise in childhood diseases. A strategy focusing on childhood cancer could provide a template for fighting other diseases. Cancer's relatively high mortality rate, its rising incidence rates, and its scientific complexity make it an ideal candidate for such an initiative. The model used to uncover truths about the rises in childhood cancer incidence may illuminate approaches to other comparably serious diseases in children and adults.

The Progressive Policy Institute proposes that Congress adopt a strategy for conquering childhood diseases based on the following policies:

1. Create a national health information network to provide accurate, real-time cancer data.

The nation's premier cancer database covers only one-fourth of the population. Personal electronic health-record accounts would enable monitoring of disease incidence in real time across the entire population. Each American should have a secure and private electronic record for all of his or her medical information. Patients or their parents could authorize scientists to conduct approved studies and public-health surveillance programs to view their records without divulging their identity or releasing their records to a government database. Independent Heath Record Trusts would issue and maintain such accounts, as Reps. Dennis Moore (D-Kan.) and Paul Ryan (R-Wisc.) have proposed.

2. Fund the National Children's Study and the International Children's Cancer Cohort Consortium.

These studies would carefully follow the health of thousands of individuals from before birth to age 21. They will help identify the causes of childhood health problems. The Bush administration has opposed funding for the study and tried to end it before it got underway. Fortunately, Congress started funding the study last year, but funding is at risk again this year due to White House opposition.

3. Create an American Center for Cures within the National Institutes of Health (NIH) that would develop a national strategy for cures; coordinate and accelerate breakthrough research; and speed adoption of new treatment protocols.

Congress can and should apply this same strategy to other major childhood diseases such as autism and immune-related disorders such Type 1 diabetes, asthma, and food allergies. A joint effort would draw support from the hundreds of thousands of families struggling with these debilitating and life-threatening diseases.


Read the full report...


Andrea Northup, currently an academic assistant at the Tufts University European Center, holds a B.S. in Engineering and Environmental Health and a B.A. in Community Health from Tufts University. Kunal Kothari is a graduate of Georgetown University, where he attained an M.S. in Physiology and Biophysics. He recently worked as a volunteer teacher in rural India. Northup and Kothari are former Progressive Policy Institute interns. David B. Kendall is PPI's senior fellow for health policy.



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