PBS Story: Kids and Cancer: Why Pediatric Cancer Cure Rates Have Improved So Much

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Dear PBS -

Thank you for your article Kids and Cancer: Why Pediatric Cancer Cure Rates Have Improved So Much - http://www.pbs.org/newshour/bb/health/jan-june12/childrencancer_01-...

I applaud the advances in childhood cancer treatments that have been made in the past. Unfortunately, your story doesn't tell the whole story....

I lost my 14-year old son AJ to childhood cancer in January 2008. So my vision is of the future: A world where no child dies of childhood cancer. In looking forward I think the following facts and questions should also be considered in the discussion of childhood cancer:

- About 1 in 300 of America's children will be diagnosed with cancer before age 20 and the incidence rate has increased 29% in the past 20 years. Two classrooms of kids are diagnosed every school day.

- In that same 20 years, two decades overflowing with new scientific advances, only TWO drugs have received FDA approval for treatment of childhood cancer: Not enough research is being done.

- While the public hears that the overall 5-year survival rate for childhood cancers reaches 80%, there are also many types of childhood cancers that are "stubbornly resistant, with no cures in sight", and where relapse is virtually untreatable.

- As you state, the improvements in childhood cancer 5-year survival has come at a very high price: 2 in 3 of the 5-year survivors face long-term health consequences from the effects of the “cure” (radiation/chemo); secondary cancers, major organ damage and other physical, cognitive, and/or psychosocial health issues.

- 1 in 5 of those 5-year survivors will then die prematurely from cancer or treatment related causes within 30 years of diagnosis (Cause-Specific Late Mortality Among 5-Year Survivors of Childhood Cancer: The Childhood Cancer Survivor Study). So, if a 2-year old is diagnosed and lives 5-years – he or she is a “survivor”. At that point, the 7-year old “survivor” faces another 20% chance of dying pre-maturely. Does a 17 year-old or a 32 year-old dying of childhood cancer related-cause sound “cured”?

In my opinion we need to entirely shift our focus from the "80%" number and think of the the whole-life outcome for the child -- not just if they survive 5-years.

The cold reality is that 1 in 3 kids diagnosed with cancer will die prematurely and that the other 2 face a life-long "diagnosis" of childhood cancer.

Childhood cancer kills more kids than any other disease here in the US.

Future advances will not be possible without additional funding and additional childhood cancer research. Industry views childhood cancer as “rare” and any investment in it as non-profitable—it currently does virtually no research. Federal funding for childhood cancer comprises less than 4% of NCI's budget; yet curing childhood cancer is the equivalent of curing breast cancer in terms of productive life-years saved.

You can help change the future for children with cancer:

#1 - Childhood cancers are researched and treated by the Children's Oncology Group a nationwide and international network of over 200 hospitals and 7,500 doctors and researchers. 90% of children with cancer in the US are treated at a COG hospital. Readers can directly support COG's efforts at www.TheCOGFoundation.org.

#2 - Numerous national childhood cancer organizations and dozens of local and regional groups have taken unprecedented steps to collaborate and support the the KidsCancerFight.org website allowing visitors to learn more about childhood cancers and join the fight locally or nationally. Please visit www.KidsCancerFight.org.

#3 - The Creating Hope Act is innovative legislation that will incentivize drug companies to invest in childhood cancer research in return for a voucher that will let them speed other, more profitable drugs to market. This creates incentive at no cost to the American taxpayer. More childhood cancer research means better treatments and moving closer to a world where no child dies of childhood cancers. Nancy Goodman is the architect of the Creating Hope Act, the founder of Kids v Cancer (www.kidsvcancer.org) and, forever mom to Jacob. Read more about the Creating Hope Act here: http://bit.ly/CreatingHopeAct or visit http://bit.ly/congressweb-CHA to write your representatives and support this important Act.

Given PBS's reputation for sound and complete journalism, we hope you will consider talking with other researchers, parents and advocacy groups to learn "the rest of the story" and help bring attention to the underfunding and under-awareness in the childhood cancer world.

Respectfully,
AJs Dad
PAC2

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