Child Cancer Survivors Urge Congress to Preserve Research Funding

WASHINGTON — Child cancer survivors, their parents and their doctors appealed to Congress Tuesday to reverse budget decisions they said would effectively reduce federal support for pediatric cancer research.

"We just have to continue to fight for a cure. The fight will not be over until there is a cure," said Janet Waters of Powder Springs, Ga., whose 11-year-old son Michael has a tumor near the center of his brain.

"What we have now is not good enough," she added.

The Washington rally for pediatric cancer funding was sponsored by an advocacy group, CureSearch, formed by the National Childhood Cancer Foundation and the Children's Oncology Group, a network of pediatric cancer research centers.

Because of budget pressures on the National Cancer Institute (NCI), cancer researchers were advised earlier this year to plan for cuts of roughly 10 percent in government research grants.

However, an NCI official said the agency was able to maintain funding for most cancer researchers at near last year's levels.

This year, the outlook is for flat funding again, although Congress has not finished action on NCI appropriations, said Jeff Abrams, chief of the agency clinical investigations branch.

"I can certainly understand patient advocacy groups wanting more funding for research," Abrams said, "but unfortunately, the times are such that that's hard to expect right now."

Waters and about 350 cancer family members and physicians appealed for support for a bill introduced by Sens. Jack Reed, D-R.I., and Norm Coleman, D-Minn., directing NCI to expand funding.

Georgia Sens. Saxby Chambliss and Johnny Isakson are among 21 co-sponsors of the bill.

Waters, who said Michael will be in the sixth grade at Lovinggood Middle School in Powder Springs this fall.

She said her son "has done really well," thanks to two debilitating rounds of chemotherapy which he endured after the tumor was discovered over five years ago.

"We just have to continue to fight for a cure," she said. "What we have now is not good enough. I've seen too many kids die, too many have long term effects. I ask what if it grows back? What do I tell my son if it grows back?"

Colleen Gaier of Fairborn, Ohio, said she came to the rally because her 21-year-old daughter Jennifer survived lymphoma diagnosed when she was seven — but other children did not.

"She is alive today and other children diagnosed when she was are not," said Gaier. "I want to tell people to sign up for CureSearch. Be a voice for children who can't be a voice."

While the research advocates were meeting with members of Congress, science advisers were being told that childhood cancer will not be a priority goal of the fledgling National Children's Study.

The $3 billion, 25-year study will track 100,000 American kids, from conception to adulthood, in an effort to define the role of such factors as genetics, lifestyle and environment in the development of childhood disease.

Because cancer is relatively rare in children, the study would not be large enough to identify statistically significant relationships between the disease and possible causes,

officials said.

Instead, "priority outcomes" will include problems such as asthma, obesity, autism and reproductive disorders.

The study was ordered by Congress in 2000 and organized by the Centers for Disease Control and Prevention, the National Institutes of Health and the Environmental Protection Agency. Despite support from pediatricians, the chemical industry and other groups, it has not been fully funded and was ordered terminated last year by President Bush.

It was rescued this year when Democrats in Congress pushed through a $61 million appropriation. Spending bills in both the House and Senate contain an appropriation of $111 million for next year.