H.R. 1553 would amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers.
Detailed Summary
Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 - (Sec. 4) Amends the Public Health Service Act to require the Secretary of Health and Human Services to continue to enhance, expand, and intensify pediatric cancer research and other activities related to pediatric cancer, including therapeutically applicable research to generate effective treatments, pediatric preclinical testing, and pediatric clinical trials through National Cancer Institute-supported pediatric cancer clinical trials groups and their member institutions. Encourages the Secretary to take into consideration the application of such research and other activities for minority, health disparity, and medically underserved communities.
Authorizes the Secretary to award grants to childhood cancer professional and direct service organizations for the expansion and widespread implementation of: (1) activities that provide information on treatment protocols to ensure early access to the best available therapies and clinical trials for pediatric cancers; (2) activities that provide available information on the late effects of pediatric cancer treatment to ensure access to necessary long-term medical and psychological care; and (3) direct resource services such as educational outreach for parents, information on school reentry and postsecondary education, and resource directories or referral services for financial assistance, psychological counseling, and other support services. Encourages the Secretary to take into consideration the extent to which an entity would use such grant for purposes of making activities and services available to minority, health disparity, and medically underserved communities. Requires the Secretary to develop and implement metrics-based performance measures to assess the effectiveness of activities funded under such grants. Requires any information made available pursuant to a grant to be: (1) culturally and linguistically appropriate as needed by patients and families affected by childhood cancer; and (2) approved by the Secretary.
Authorizes appropriations for FY2009-FY2013.
Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to award a grant to enhance and expand infrastructure to track the epidemiology of pediatric cancer into a comprehensive nationwide registry of actual occurrences of pediatric cancer. Requires such registry to be updated to include an actual occurrence within weeks of the date of such occurrence. Subjects such registry to federal laws regarding records maintained on individuals, health information privacy regulations, informed consent regulations, and any other federal laws relating to the privacy of patient information.
Status of the Legislation
Latest Major Action: 7/29/2008: Signed by President.
Points in Favor
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Points Against
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Visitor Comments
T Tuhill
My daughter was diagnosed with Hodgkins Lymphoma in 2005. She is in remission after a stem cell transplant. Clinical trials and research improve treatment outcomes for children with cancer. Families need access to new treatment options when others fail. To find causes, we must track incidences, and look for means to prevent the number one killer of children. My daughter is a survivor, not everyone is so forunate.
Valerie Johnson
My daughter was diagnosed with a brain tumor @ 9 months old. Two weeks before her 1 st birthday, she underwent a nine hours brain surgery which left her with lifelong medical problems. This was followed by 1 1/2 years of chemotherapy. How many children have to suffer this way before research becomes properly funded? How many parents have to experience this pain before our goverment takes a stand? Please remember our story and fight for the "Conquer Childhood Cancer Act". Write to your congressman, spread the word, visit www.CureSearch.org. Innocent children are counting on us, we can't let them down!
Cassandra E.
I am a cancer survivor of Luekemia A.L.L. I was diagnosed when I was just nine years old. I am now 17 and am fighting for this bill. I have been to DC twice in the past two years talking to congress and representatives about this bill and trying to get them to pass this bill. We can't do it alone, we all need to stand as one and get the word out there. I am ready to go marching through those doors and get this bill on the road. I know all to well what can happen when cancer isn't beat, someone looses a daughter, a son, a niece, a grandchild, a nieghbor, and so on. When will the pain and suffering come to an end? This bill needs to be passed now. There is a cure!
Alana C.
My son was diagnosed with a primary sarcoma of the brain in July 2003, went through surgery, radiatoion and chemo - and then the cancer came back, so more surgery and chemo. Finally, he got AML and died June 29, 2005. We and the world are missing his wonderful presence on earth. We need more research to find out how to stop pediatric cancer!
Randy Hinton
In late 2006 a meeting was held in Houston between the FDA and the Burzynski Clinic to discuss the results of his phase II trial for Diffuse Intrinsic Brainstem Glioma which is the deadliest and rarest childhood brain tumor.The results were as follows.26 out of 110 children were symptom free at 2 years and 6 out of the 26 were symptom free at 5 years and considered CURED.This was far better than any results at any cancer hospital in America and the clinic asked for full approval.The FDA not only denied full approval but has ONLY NOW given approval to a amended version of phase III.Under the present system,if a very big jump in treatment is presented to the FDA it will take decades to get full approval and insurance coverage.
Cheryl Huebner
My daughter was diagnosed with a neuroendicrine carcinoid tumor the size of a tennis ball inside the base of her tongue the day before her 15th birthday. Very rare tumor for a child and the unique location brought heavy challenges for the doctors. Chemo, major surgery, radiation. Tough times, but I still have my daughter. She also went to DC to lobby for this bill and is a HUGE Team Will supporter for Ride to Reach the Day. We worry daily. What if her tumor returns? We need help NOW! Visit www.curesearch.com get involved to find a cure for Childhood Cancer!