HR 653 / S.305 FAQ
Mar 16th, 2009 by admin
National Childhood Brain Tumor Prevention Network Act of 2009
HR 653 and S.305
What will HR 653 & S.305 accomplish?
There will be a comprehensive study of childhood brain tumors (CBT) to determine risk factors and causes of CBT. Comprehensive means that the study will investigate:
- Environmental exposures
- Nutrition (what kinds of food, how many calories, etc.)
- Genetics (parents and child), epigenetics (what turns genes off or on), viral DNA (does CBT have a viral link)
- Blood taken at birth (has the child’s DNA changed since birth)
- Type of CBT (pilocytic astrocytoma, ependymoma, etc.)
- Region where the child lives in comparison to other regions
Why Is this Childhood Brain Tumor Bill Necessary?
Childhood brain tumors are:
- Leading cause of death from solid tumors in US children (in 2005, the leading cause of cancer death)
- Number one most common form of solid tumors in US children
- 2nd most common cancer among US children
Almost nothing is known about the causes of children’s brain tumors:
- 5% are caused by genetic diseases
- 95% of causes are unknown
If we don’t look, we cannot know…
What is the cost of childhood brain tumors and S 305/HR 653?
- Hospital treatment cost $250,000 per child
- Annual treatment costs in California $47 million; estimated cost in USA $523 million
- 5-year cost of brain tumors in the U.S., $2.6 billion
- 5-year cost of HR 653/S.305, $0.125 billion
HR 653/S.305 adds money to NIH budget (it does not compete with other NIH projects)
Are childhood brain tumors increasing?
-
Pilocytic astrocytoma is the most common CBT
Childhood (0-19 yr) Age Adjusted Incidence Rates for Pilocytic Astrocytomas -
Entirely new types of brain tumors are being seen (mostly in children)
- Angiocentric Glioma
- Pilomyxoid Astrocytoma
- Papillary Glioneuronal Tumor
- Rosette-forming Glioneuronal Tumor of the 4th Ventricle (RGNT)
- Papillary Tumor of the Pineal Region
- Pituicytoma
- Spindle Cell Oncocytoma
- Is this caused by something in the environment?
If we don’t look, we cannot know…
What are the likely regions to be included in the study (most of USA)?
- California/Northwest
- Texas/Southwest
- Midwest
- Florida/Southeast
- New York/Northeast
How is the study coordinated and administered?
- Money is in addition to National Institutes of Health (NIH) budget
- Does not compete with other health problems
- Administered by the National Cancer Institute (NCI is within NIH)
- Awards grants, coordinate project, administers study through expert panel (includes brain tumor scientists and brain tumor survivors)
Is S.305/HR 653 consistent with National Institutes of Health’s priorities?
- Provides implementation of NIH’s 2008 Research Priority
“Plan and support a multicenter case-control study of the etiology of childhood brain cancer through the Brain Tumor Epidemiology Consortium (BTEC)”
What is the Legislative Strategy?
- Based on successful campaign for the Benign Brain Tumor Cancer Registries Amendment Act
- Use existing Internet brain tumor community
- Work with brain tumor advocacy organizations
- Without money, or organizational structure the brain tumor community created an important law–
We can do it again!!!!!!
Want to Help?
Contact:
Lloyd Morgan, “Chief Cheerleader”
510.528.5302; email hidden; JavaScript is required
I feel that this is a great bill. My 11 year old son was diagnosed at thanksgiving of 2008 with an inoperable diffuse tumor, gliomatosis cerebri. He was given 6 months to a year to live. It has been completely devastating for my family. I have learned since then just how uneducated not only the parents are who have children with brain tumors, but the physicians as well. All I have heard from his oncologist since my son has been diagnosed regarding any problem he has is “I am not a brain tumor specialist; I really don’t know; no one is looking is really studying it as it is so rare” I’m sorry but as a parent those answers are not good enough. I have tried to contact specialists but there are so few, especially that are available to middle income families, like mine. One doctor wanted $1,900 just to look at my sons MRI scans via e-mail. Very unfortunate that in order to try to save your childs life you have to be a millionaire. Hopefully this bill will enable the medical community as a whole to better understand tumors, their causes, syptoms and effects, so that they may develop preventive measures, better treatments and be able to educate parents and caregivers of children suffering from brain tumors.