Alliance Releases Principles of Health Reform The Alliance for Childhood Cancer has released it's Principles of Health Reform in order to ensure that those affected by Childhood Cancer are not forgotten when Congress and the White House work reform health care. These principles include the need for the health care system to be reformed to ensure that cancer survivors will not be denied coverage due to their cancer diagnosis, that survivors of childhood cancer have access to comprehensive and multi-disciplinary follow-up care, and that cancer survivors and their families have access to quality cancer care without unreasonable and bankrupting expense. Alliance Holds Spring Meeting The Alliance for Childhood Cancer met on May 21, 2009.  The Alliance considered various issues and legislative activity relating to childhood cancer survivorship, health reform, and NIH appropriations.   An overview of the Cancer ALERT Act, introduced by Senators Kennedy and Hutchison was provided, including the childhood cancer survivorship provisions incorporated at the request of the Alliance.  The Alliance then discussed the Childhood Cancer Research and Survivorship Act of 2009, recently introduced by Reps. Jack Speier (D-CA) and Mary Bono Mack (R-CA).  This legislation was originally introduced last Congress and the Alliance worked closely with sponsors in the development of the legislation. The Alliance will pursue opportunities to advocate for introduction of a Senate bill and work on furthering the House version.    Funding for the National Institutes of Health (NIH), was also discussed.  A letter to leaders of the Appropriations Committees urging full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act was endorsed by the group. Updates were given on a number of topics, including the new Congressional Pediatric Cancer Caucus, National Childhood Cancer Day, proposed legislation on childhood brain tumors, and progress on legislation providing the Food and Drug Administration with the authority to regulate tobacco products.   The Alliance also approved St. Baldrick’s Foundation’s application for membership. Childhood Cancer Survivorship Research and Quality of Life Act of 2009 Introduced by Reps Speier and Bono Mack The Childhood Cancer Survivorship Research and Quality of Life Act of 2009 was introduced by Representative Jackie Speier (D-CA) and Representative Mary Bono (R-CA) on April 24, 2009 The bill, also known as the Childhood Cancer Survivorship Act, would lead to improved health for the growing number of survivors of childhood cancers by improving and expanding the delivery of medical and psychosocial care to survivors of childhood cancer.  Specifically, the legislation would:   Establish NIH cancer survivorship programs, including grants to address health disparities in childhood cancer survivorship.   Create grants to fund clinics for comprehensive long-term follow-up services for survivors of childhood cancer. Provide funding for grants to improve access to care for survivors of childhood cancer.   Expand Centers for Disease Control and Prevention cancer control programs, including programs aimed to provide guidance to states and encourage them to improve systems of care for survivors of childhood cancer.  The Alliance has endorsed this legislation and would like to thank Representative Speier and Representative Bono Mack for their commitment to improving the quality of life of childhood cancer survivors. Alliance for Childhood Cancer Honors Representative Deborah Pryce for Leadership on Childhood Cancer Issues On September 24 the Alliance for Childhood Cancer held a reception to honor Rep. Deborah Pryce (R-OH) for her leadership and commitment to the needs of children affected by cancer. Rep. Pryce, who announced her intention to retire this past August, was elected to Congress in 1992. During her eight terms of service to Ohio’s 15th District, Rep. Pryce has introduced many pieces of legislation to improve the lives of children affected by cancer.  On July 29, 2008, the President signed into law the Caroline Walker Pryce Conquer Childhood Cancer Act, which will increase funding for research into childhood cancer. The legislation was named in honor of Rep. Pryce's daughter, who was nine years old when she died of cancer in 1999. This past January, Rep. Pryce introduced the Compassionate Care for Children Act with Rep. John Murtha (D-PA) to improve the quality of palliative and end-of-life care for children and assure that their families have access to appropriate resources. Rep. Pryce is also a Co-Founder and Co-Chair the House Cancer Caucus. Full Press Release Event Pictures Conquer Childhood Act Signed Into Law ­ On July 29, 2008 the President signed into law the Caroline Walker Pryce Conquer Childhood Cancer Act, which will increase funding for research into childhood cancer. The legislation was named in honor of Rep. Deborah Pryce's (R-OH) daughter, who was nine years old when she died of cancer in 1999. The Senate passed the bill on July 16 and The House of Representatives passed the bill June 12.   The legislation authorizes $30 million per year for Fiscal Years 2009-2013 to: Encourage and expand support for NCI's existing biomedical research programs designating a 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 expanding and implementing activities to raise public awareness of 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. The legislation has been endorsed by the Alliance for Childhood Cancer.  The Alliance thanks Rep. Pryce for her dedication and efforts in advancing this bill. Alliance Holds Congressional Briefing with City of Hope ­ Alliance for Childhood Cancer and City of Hope Hold Congressional Briefing To Educate Congress on Childhood Cancer Survival On June 9, 2008 in coordination with Representatives Hilda Solis (D-CA) and Mary Bono Mack (R-CA), the Alliance for Childhood­ Cancer and City of Hope held a Congressional briefing entitled “Childhood Cancer Survivors: Recommendations for Improving Care and Quality of Life for Survivors,” to educate Hill staff and members of the cancer community about of the key issues affecting childhood cancer patients and survivors.  In December 2007, Reps. Solis and Bono Mack introduced the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2007(H.R. 4450). The bill, known as the Childhood Cancer Survivorship Act, supports improved health for the growing number of people who have battled childhood cancers by improving and expanding the delivery of medical and psychosocial care to these survivors. Sen. Hillary Clinton (D-NY) introduced the Senate version of the bill (S. 2877) this past April. Specifically, the legislation would establish: National Institutes of Health (NIH) cancer survivorship programs, including grants to address health disparities in childhood cancer survivorship.  Clinics that would provide comprehensive long-term follow-up services for survivors of childhood cancer. Grants to improve access to care for survivors of childhood cancer. Centers for Disease Control and Prevention cancer control programs to provide guidance to states and encourage them to improve systems of care for survivors of childhood cancer. The briefing was well attended by Congressional health staffers.  Speakers 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. The speakers talked about the importance of research, survivorship clinics and long-term follow-up care in improving the quality of life for children, adolescents, and young adults with cancer.  Mr. Lustig opened the briefing by introducing the speakers and discussing the importance of educating survivors of childhood cancer about 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. Then, she discussed the various late effects faced by childhood cancer survivors, including cognitive dysfunction, fertility, and the development of second cancers. “Over the past four decades, we have made a tremendous amount of progress in childhood cancer survival. However, two-thirds of these survivors suffer from delayed onset chronic health conditions, necessitating comprehensive long-term follow-up care by an experienced multidisciplinary team of healthcare providers," Dr. Bhatia said.  She concluded her remarks by emphasizing the need for survivor care plans and physician training programs.  Dr. Weiner described the advocacy efforts behind The Childhood Cancer Survivorship Act. She also reviewed how the legislation would improve and enhance research and programs on cancer survivorship. “We all understand the important role of research in developing new treatment options for childhood cancer survivors, but developing and passing legislation is also a critical step for improving patient care,” she said. Dr. Weiner concluded her remarks by urging the Congressional staffers to encourage their Members to sign on 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.

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