Senator Hillary Rodham Clinton(D-NY) recently introduced a companion bill (S 2877) to HR 4450, The Pediatric, Adolescent and Young Adult Cancer Survivorship and Quality of Life Act to improve and expand the delivery of medical and psychosocial care to survivors of childhood cancer. The bill makes minor modifications to the House version introduced by Representative Hilda Solis (D-CA) in December 2007. The legislation reflects the recommendations of the 2003 Institute of Medicine (IOM) Report to enhance the delivery of follow-up care, increase education and training for health care providers, and expand research to improve the lives of childhood cancer survivors. The legislation would:

 

In her press release announcing the bill introduction, Senator Clinton highlighted the support of the member organizations of the Alliance for Childhood Cancer, including The Children's Cause for Cancer Advocacy (CCCA). The Alliance and CCCA worked with Rep. Solis in the development of the House bill, which has been a high priority of the coalition for several years. With introduction of the Senate bill, the childhood cancer community will continue working to educate Members of Congress and build support for the legislation over the coming year.

 

 

Under the banner "Mobilizing for Healthy Change," more than 125 survivors and family members participated in a CCCA hosted conference aimed at helping young adult cancer survivors and their families explore and understand topics relevant to their long-term health care. RTA-DC was held on April 12-13, in Washington, DC, at Georgetown University. The kick-off celebration was a lively event with attendees networking, enjoying the drumming skills of a survivor, and the launch of a new guidebook for survivors, The Next Step... Crossing the Bridge to Survivorship, published by Dr. Aziza Shad and other members of the Lombardi Comprehensive Cancer Center and Georgetown University Hospital team. The celebration also included a raffle for several education scholarships donated by the Ulman Cancer Fund for Young Adults.

 

On April 13, participants had an opportunity to peruse the resources available from the organizations who exhibited during the conference. In his introductory remarks, Craig Lustig, Executive Director of CCCA, encouraged attendees to truly engage in the conference by sharing their stories and challenging the speakers. The conference included two plenary sessions, featuring experts and survivors discussing late effects and long-term survivorship, and health insurance and legal protection issues. Speakers provided valuable and practical information on the breadth of issues faced by survivors and their families.

 

Rise to Action also featured a series of breakout sessions which focused on specific topics of interest to participants and allowed even more opportunities for survivors and families to interact and ask questions of panelists. Breakout topics included: Advocacy, Brain Tumors, Education & Employment, Family & Peer Relationships, Fertility, and Intimacy & Sexuality. The day ended with concurrent panels - one comprised of survivors and one of parents.

 

A closing reception provided yet another opportunity to share experiences, raffle additional scholarships and hear the talents of fellow survivors through a poetry reading and a hip-hop performance.

 

 

Building on the momentum of the very successful RTA-DC conference, CCCA brought together young adult cancer survivors and parents to advocate for the needs of the childhood cancer community on Capitol Hill. The inaugural CCCA Lobby Day, held on Monday, April 14 mobilized 42 attendees to discuss the long term needs of childhood cancer survivors, including their personal experiences as survivors, the importance of co-sponsoring the Childhood Cancer Survivorship Act (HR 4450) and the need for increased funding for the National Instiutes of Health (NIH).

 

Since most survivors were advocating on Capitol Hill for the first time, attendees participated in advocacy training the morning of the Lobby Day where they received an overview of the legislative process and learned strategies for effective messaging. Breakout sessions included role playing exercises to provide the attendees an opportunity to refine their messaging around the key issue areas. After advocacy training, survivors and parents as well as CCCA Staff and volunteers participated in a total of 20 congressional meetings with key legislative staffers and even members of Congress.

 

The impact of the personal stories and experiences from the survivors and parents had both a positive and profound impact on the offices they visited. Since the Lobby Day, five additional co-sponsors have been added to the Childhood Cancer Survivorship Act and commitments from a number of other offices to do so in the near future as a result of these congressional meetings.

 

 

A recent study in the online publication Blood highlighted the improvement of survival rates in the last three decades of childhood cancers, especially leukemia with the introduction of more effective therapies. However, survivors of this disease still face many challenges with ongoing chronic health conditions and overall quality of life as a result of the disease. Acute lymphoblastic leukemia (ALL) is the most common childhood leukemia and childhood cancer overall, accounting for approximately one-fourth of all pediatric cancers. Each year, about 3,000 new cases are diagnosed in the United States; in recent years, the cure rate has improved significantly with the estimated five-year survival rate greater than 80 percent.

 

The population evaluated in this study was part of the Childhood Cancer Survivor Study (CCSS), a National Cancer Institute (NCI) funded, multi-institutional cohort, the largest comprehensive research cohort of long-term childhood cancer survivors. The study included 4,151 survivors who self-reported effects up to 25 years post-diagnosis. The study also examined treatment regimens and disease relapse to understand how these factors might have long-term effects on survivors' quality of life.

 

By 25 years after diagnosis, 13 percent did not survive, most commonly from recurrent ALL or from a second cancer, the report indicates. Compared with siblings, ALL survivors were 2.8-3.6 times more likely to experience a chronic medical condition and a severe chronic medical condition, respectively. The study also reports that the mortality rate was higher in subjects treated with radiotherapy than in those who had not: 23.3 percent vs. 13.4 percent.

 

Additionally, survivors' social and economic outcomes, including rates of marriage, college graduation and health insurance coverage were significantly lower than those of their siblings. The study highlights the importance of practicing clinicians recognizing that because the cancer survivor population is growing and aging, in many instances late complications of therapy will not become evident until many years - even decades after the child has completed therapy.

 

 

The House Energy and Commerce Committee overwhelmingly approved legislation to grant the Food and Drug Administration (FDA) the authority to regulate tobacco products. The Family Smoking Prevention and Tobacco Control Act (HR 1108) was approved by the full committee on April 2 by a vote of 38 to 12. This is the first time a House Committee has approved such legislation and continues momentum towards passage by the full House of Representatives. The Senate Health, Education, Labor and Pensions (HELP) Committee passed its version of the bill in 2007.

 

HR 1108 would not only give the FDA authority to regulate tobacco products, but would restrict advertising and marketing of tobacco products - especially marketing and sales to children, control nicotine levels, and require larger, more effective warning labels on products. The bill would mandate tobacco companies disclose the contents of tobacco products, changes to their products, and research about the health effects of their products. HR 1108 would also require tobacco companies to pay user fees that would fund the FDA's new tobacco-related responsibilities. The Committee made several minimal modifications to the bill which did not appear to weaken its overall effect.

 

Each day, 1,200 Americans die from tobacco use and more than 1,000 children become regular smokers. Despite the death and disease they cause, tobacco products are virtually unregulated to protect public health. Tobacco companies continue to design and market products that entice and appeal to children, as evidenced by a recent report by a coalition of public health organizations (www.tobaccofreekids.org/productsreport). 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.