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Alliance for Childhood Cancer |
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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 |
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The Alliance held its quarterly meeting on September 23, 2008. Many important issues relating to the pediatric oncology community were discussed. The Alliance discussed its recent and upcoming events, including the June Congressional Briefing and the Reception honoring Representative Deborah Pryce.
The Pediatric, Adolescent and Young Adult Cancer Survivorship and Quality of Life Act of 2007, was also discussed in detail. City of Hope gave a presentation about their activities to date in regards to the legislation, which was followed by an update from Alliance members about their activities surrounding the bill. The Alliance, along with City of Hope, has been instrumental in advocating for the bill on Capitol Hill.
Also discussed were issues relating to the Children’s Compassionate Care Act, Michelle’s Law, and the Alliance’s legislative priorities for 2009.
Alliance members received updates on several legislative, regulatory and other relevant initiatives including funding for SCHIP, NIH appropriations, the Pediatric Cancer Caucus, expanded access to experimental drugs, legislation authorizing the FDA to regulate tobacco, and state initiatives regarding participation in clinical trials. |
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The Alliance for Childhood Cancer is bringing together its membership of more than twenty national patient advocacy groups and professional medical and scientific organizations in commemoration of National Childhood Cancer Awareness Day on September 13.
Last May, Senators Hillary Rodham Clinton (D-NY) and Wayne Allard (R-CO) introduced S. Res. 563 designating September 13, 2008 as National Childhood Cancer Awareness Day in hopes of increasing public knowledge of childhood cancers and help make it a top public health priority. “The Alliance thanks Senators Clinton and Allard for helping to raise awareness of childhood cancer issues,” stated Edwin Forman, co-chair of the Alliance for Childhood Cancer.
“National Childhood Cancer Awareness Day presents a public opportunity to highlight the issues most important to improving the lives of children with cancer as well as childhood cancer survivors including pediatric cancer drug development, research and clinical trials participation, survivorship, and palliative care,” said Craig Lustig, co-chair of the Alliance for Childhood Cancer.
Senator Clinton has long been a champion of childhood cancer issues, including the recent introduction of the Childhood Cancer Survivorship Act (S. 2877). The bill, which aims to improve and enhance research and programs on cancer survivorship, was first introduced in the House of Representatives in December 2007 by Representative Hilda L. Solis (D-CA) and Representative Mary Bono (R-CA). The House bill (H.R. 4450) currently has 34 co-sponsors. The Alliance for Childhood Cancer strongly supports the Childhood Cancer Survivorship Act, and urges more Members of Congress to sign on to this important piece of legislation.
Cancer kills more children and young adults between the ages of one and 20 each year than diabetes, asthma, AIDS and cystic fibrosis, combined. However, the population of survivors of childhood cancers has grown exponentially over the years. In 1960, only four percent of children with cancer survived more than five years, but now, nearly 75 percent of the children who are diagnosed with cancer have a five-year survival rate. Children who survive cancer often face serious health concerns after their treatment for cancer is complete. Nearly two-thirds of survivors of childhood cancer will face a life-altering effect from their treatment, and one-fourth will experience serious or life threatening effects. These include neurological or cognitive effects, such as learning disabilities, cardiac or pulmonary problems, a compromised immune system, and increased risk for other cancers.
The Alliance for Childhood Cancer is currently undertaking a number of activities to advance research and policies to improve the diagnosis, treatment, care, and survivorship of children and adolescents with cancer, as well as enhance public awareness. |
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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. |
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On July 10, 2008 the Alliance for Childhood Cancer sent letters to Representative Deborah Pryce and Representative John Murtha endorsing H.R. 5192, the Compassionate Care for Children Act.
H.R. 5192 seeks to improve the quality of palliative and end-of-life care for children and assure that their families have access to appropriate resources. It was introduced January 29, 2008.
The legislation addresses many of the recommendations of the 2003 Institute of Medicine (IOM) report, "When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families." The report highlights the difficulties of the health care system in meeting the physical, emotional, and spiritual needs of children and their families throughout the course of the child's life-threatening illness, and offers recommendations on how to address them.
The legislation includes provisions to:
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improve the palliative care training of physicians, nurses, and other health care professionals who treat seriously ill children
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provide grants to create and expand pediatric palliative care
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fund research grants for pain and symptom management research
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create demonstration projects that will allow children to receive hospice care services without requiring certification that the child has less than 6 months to live, while also ensuring that parents will not have to forego disease treatment for their child.
The Alliance for Childhood Cancer applauds the efforts of Reps. Pryce and Murtha to improve palliative care for children. |
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Alliance for Childhood Cancer and City of Hope Hold Congressional Briefing To Educate Congress on Childhood Cancer Survival
On June 9, 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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The Childhood Cancer Survivorship Act was introduced by Representative Hilda L. Solis (D-CA) and Representative Mary Bono (R-CA) on December 11, 2007. This legislation would improve and enhance cancer survivorship research and programs. The Alliance has endorsed this legislation and would like to thank Reps Solis and Bono for their commitment to improving the quality of life of childhood cancer survivors.
Alliance Press Release
Rep. Solis’ Press Release |
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The Institute of Medicine released in October 2007 a report calling for a new standard of care that addresses cancer patients’ psychological and social needs, and how “psychosocial” care can be improved. Psychosocial health care addresses the emotional challenges that can accompany a serious illness as well as the life challenges that can prevent good healthcare and patients’ ability to take care of themselves. The report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, states that care that focuses solely on getting rid of the cancer without addressing the patient's general well-being can increase patients' suffering, may compromise their ability to follow through on treatment, and falls short of achieving quality care.
The report proposes a new standard of care under which all oncology care providers would systematically screen patients for distress and other problems; connect patients with health care or service providers who have resources to tackle these issues and coordinate care with these professionals; and periodically re-evaluate patients to determine if any changes in care are needed. To achieve this, the report recommends an evidence-based model for ensuring that psychosocial health services are an integral part of cancer care and provides strategies for implementing this model in settings with varying levels of resources. Copies of Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area). The full text of this report is available at http://www.nap.edu. |
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