Archive for Thursday, January 25, 2007

Letter: Action needed

January 25, 2007

My recent trip to Washington, D.C. was disheartening this time. We were told at the annual team leader meeting for CureSearch/National Childhood Cancer Foundation that the National Cancer Institute has again cut funding across the board another 20 percent.

This means we will be receiving less than 50 percent of our NCI allotment, which will cause us to have to turn 400 children down for translational or clinical trials.

The Children's Oncology Group normally enrolls 4,000 patients a year. With the reduction, we'll have to turn away 400 more patients.

That's a big cut for us, as 12,500 children are diagnosed and 2,500 of those will die. This is one in four children diagnosed that will die.

While the cure rate is up to 78 percent, that is for first incidence only. So if you relapse, that is not taken into account.

Among the childhood cancer survivors, 62 percent had at least one chronic health problem compared with 37 percent of siblings. About 28 percent of survivors had illnesses that were severe, life threatening or disabling, compared with 5 percent of siblings. Almost 24 percent of survivors, but only 5 percent of siblings, had three or more ailments.

We are requesting funds by appropriations and an authorization in the amount of $7 million. Compared to the federal grants to other cancers, this is very small.

In addition, the "Conquer Childhood Cancer Act" will be reintroduced to the 110th Congress. This will expand the biomedical research program; establish a population based national childhood cancer database (the Childhood Cancer Research Network) to monitor incidence and identify causes, and aid in the development of preventative strategies; to support the development, construction and operation of a comprehensive online public information system on childhood cancers and services available to families; establish a fellowship program in pediatric cancer research to foster clinical translational research career development in pediatric oncology in the early stages; and to provide information services to patients and families affected by childhood cancer.

It would be of great help if you could take just a couple of minutes of your time to e-mail our Congressmen and Senators and ask them to work toward these goals with us. We have requested three appropriations and authorization along with the bills HR4927 and S2393, the "Conquer Childhood Cancer Act."

Our research is at a critical point. We seriously need increases along with the appropriations and authorizations named above. Your help can save the life of a child.

Judi O'Grady
Kansas Team Leader for CureSearch

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