• Caroline Pryce Walker Conquer Childhood Cancer Act Overwhelmingly Passes House

• Alliance for Childhood Cancer and City of Hope Hold Congressional Briefing to Educate Congress on Childhood Cancer Survival

• House and Senate Take Action on FY 2008 Supplemental Appropriations and FY 2009 Budget

• House Vote on 2009 Tobacco Control Legislation May be Imminent

• Senate Passes Resolution on National Childhood Cancer Awareness Day

• Dr. Larry Kun Receives 2008 ASCO Pediatric Oncology Award

Caroline Pryce Walker Conquer Childhood Cancer Act Overwhelmingly Passes House

The House of Representatives overwhelmingly passed the Caroline Pryce Walker Conquer Childhood Cancer Act (H.R.1553), which will increase research into childhood cancer. The legislation passed by a vote of 416-0 on June 12, was introduced by Rep. Deborah Pryce (R-OH) and renamed during committee mark-up in honor of Rep. Pryce’s daughter, who was nine years old when she died of cancer in 1999.

The bill authorizes $30 million per year for the fiscal years 2009-2013 to support the following activities:

• Encourage and expand support for the biomedical research programs of the existing National Cancer Institute—designated multi-center national infrastructure for pediatric cancer research.
• Establish a population-based national childhood cancer database, called the Children's Cancer Research Network, to evaluate incidence trends of childhood cancers.
• Authorize grants to organizations for expansion and implementation of activities to raise public awareness of information, treatment and research for pediatric cancers.
• Support the development, construction and operation of a comprehensive on-line public information source on childhood cancers.
• Establish a fellowship program in pediatric cancer research.

Alliance for Childhood Cancer and City of Hope Hold Congressional Briefing to Educate Congress on Childhood Cancer Survival

In coordination with Representatives Hilda Solis (D-CA) and Mary Bono Mack (R-CA), the Alliance for Childhood Cancer, of which Children’s Cause is a founding member, and City of Hope held a Congressional briefing entitled, “Childhood Cancer Survivors: Recommendations for Improving Care and Quality of Life for Survivors.” The goal of the briefing was to educate Hill staff and members of the cancer community about key issues affecting childhood cancer patients and survivors. The collaborating organizations also used the briefing as an opportunity to discuss the importance of research, survivorship clinics and long-term follow-up care in improving the quality of life for children, adolescents, and young adults, and to urge for support of the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2007(H.R. 4450/S. 2877).

Speakers for the briefing included Alliance Co-Chair Craig Lustig, Executive Director of The Children’s Cause for Cancer Advocacy; Smita Bhatia, MD, MPH, and Director for Cancer Survivorship at City of Hope, a treatment facility for people with cancer and other life-threatening diseases; Susan Weiner, PhD, President and Founder of The Children’s Cause for Cancer Advocacy; and Jenny Smith, a 23-year-old pediatric cancer survivor.

Mr. Lustig opened the briefing by introducing the speakers and discussing the importance of educating survivors of childhood cancer on how to advocate for their interests and needs. He also reviewed a number of activities that the Alliance for Childhood Cancer is undertaking to advance research and policies to improve the diagnosis, treatment, care, and survivorship of children and adolescents with cancer, as well as to enhance public awareness about childhood cancer.

Dr. Bhatia highlighted the remarkable progress that has been made in treating children with cancer. She, then discussed the various late effects faced by childhood cancer survivors, including cognitive dysfunction, fertility, and the development of second cancers. Dr. Bhatia concluded her remarks by emphasizing the need for survivor care plans and physician training programs.

Dr. Weiner, a co-author of the 2003 Institute of Medicine Report, “Childhood Cancer Survivorship: Improving Care and Quality of Life,” reviewed the key recommendations from the report which served as the impetus for current childhood cancer survivorship legislation. She also urged the Congressional staffers to encourage their Members to become co-sponsors of the bill.

The briefing closed with Ms. Smith, a 23-year-old who was diagnosed with stage 4 Hodgkin’s Lymphoma during her second year of college. Ms. Smith shared her personal experience advocating for childhood cancer through the Leukemia and Lymphoma Society. “I never realized how the treatment that saved my life could heavily affect my future,” she said.

House and Senate Take Action on FY 2008 Supplemental Appropriations and FY 2009 Budget

The House of Representatives recently approved a fiscal year (FY) 2008 supplemental appropriations bill to provide emergency funding for military operations and for select domestic programs, including additional funding of $150 million for the National Institutes of Health (NIH). The funding would be distributed to NIH on a pro-rated basis, based upon appropriations for 2008. It is estimated that the National Cancer Institute would receive approximately $9 million in 2008 supplemental funding. Senate passage of the supplemental appropriations package is expected soon. The Administration has indicated it would support the compromise package.

Fiscal Year 2009 Appropriations: In other appropriations action, on June 26 the Senate Appropriations Committee approved its funding allocation for the Labor-HHS-Education Subcommittee, providing a total of $154.9 billion or $9.5 billion more than the President’s proposed budget. The bill approved by the Committee provides $30.255 billion for the NIH, an increase of $1.025 billion – 3.5 percent – over the FY 2008 budget and the President’s 2009 request.

The House Appropriations Committee, which was also considering it’s version of the Labor-HHS bill on June 26, includes slightly more than the Senate -- $30.38 billion for NIH, which is $1.15 billion, or 3.9 percent, over FY 2008 and the President’s 2009 request. According to a June 19 statement issued by Subcommittee Chair David Obey (D-WI) upon the Labor-HHS Subcommittee's passing it's version of the bill, it "provides a $1.2 billion increase over last year and the [President's] request, so that NIH can capitalize on unprecedented scientific opportunities to reduce the disease burden on the country. This increase is the largest in six years. More than 1,000 new research grants will be supported." The breakdown of specific funding levels will not be available until the full Committee votes, but according to the draft allocations outlined by the full Committee prior to the Subcommittee’s action, the Labor-HHS amount is $153.1 billion, which is $7.973 billion (5.5%) over last year and $7.765 billion more than the President requested.

Given the paucity of funding from non-governmental sources, adequate funding of NIH is critical to advance childhood cancer research. The White House has threatened to veto any spending bills that exceed the President's request.

House Vote on Tobacco Control Legislation May be Imminent

Legislation that would grant the Food and Drug Administration (FDA) the authority to regulate tobacco products is expected to be scheduled for a vote by the full House of Representatives after Congress’ July 4 recess. The Family Smoking Prevention and Tobacco Control Act (H.R. 1108) recently passed the House Energy & Commerce Committee with a strong 38-12 bipartisan vote. Several issues must be resolved, including complicated committee jurisdiction disputes, but the House leadership and committee staff are working to settle these concerns.

Because adolescent and young adult cancer survivors have an increased risk of secondary cancers, it is particularly important to ensure that these survivors avoid the use of tobacco products. More than 630 national and local public health organizations, including CCCA, currently support H.R. 1108. Currently the House bill has 232 co-sponsors and the Senate companion bill (S. 625) has 56 co-sponsors. For more information about the Family Smoking Prevention and Tobacco Control Act, please visit: http://tobaccofreekids.org/.

Senate Passes Resolution on National Childhood Cancer Awareness Day

The United States Senate overwhelmingly supported a resolution declaring September 13, 2008, National Childhood Cancer Awareness Day. The resolution S. Res 563, introduced on May 13 by Senators Wayne Allard (R-CO) and Hillary Clinton (D-NY), and passed on May 22. The resolution is intended to encourage the federal government, states, localities and nonprofit organizations to observe the day with appropriate programs and activities--with the goals of increasing public knowledge of the risks of cancer, recognizing the human toll of cancer and making its prevention and cure a public health priority. When introducing S.Res. 563, Senator Allard noted that “This day complements efforts I have made to draw attention to the troubles of childhood victims of cancer and the great work that groups across the country have done and are doing to address childhood cancer in all of its forms.” September is currently recognized as Childhood Cancer Awareness Month, however this new designation is intended to further enhance awareness about the issues faced by children with cancer and their families.

Dr. Larry Kun Receives 2008 ASCO Pediatric Oncology Award

Larry Kun, MD, a pediatric and radiation oncologist at St. Jude Children’s Research Hospital recently received the prestigious American Society of Clinical Oncology (ASCO) Pediatric Oncology Award, which honors individuals who have contributed outstanding scientific work – laboratory, clinical or epidemiologic, to the future of pediatric oncology. Dr. Kun, also Chair of the Department of Radiological Sciences and founding leader of the Brain Tumor Program at St. Jude received the award for his work on pediatric brain tumors and neuroimaging. Although his research has increasingly focused on pediatric brain tumors, his other interests include soft tissue sarcomas, Ewing sarcoma, Hodgkin lymphoma, malignancy lymphomas and the late effects of cancer treatment. Over the course of almost 40 years as a clinician, researcher and academician, Dr. Kun has been a leader in pediatric cooperative trial groups, authored or coauthored over 340 peer-reviewed medical articles and held multiple leadership position in oncology-related societies. Last year Dr. Kun was honored with the 2007 ASTRO Gold Medal (bestowed on leaders “…who have made outstanding contribution to the field of radiation oncology, including research, clinical care, teaching and service”), and was also a recipient of the Children’s Brain Tumor Foundation’s Pioneer Award for pediatric radiation oncology, honoring his efforts at St. Jude.

CFC No. 71422