The Next Step, September 2010

CCCA Testifies at Congressional Pediatric Cancer Caucus Childhood Cancer Summit

In recognition of September as Childhood Cancer Awareness month, the Congressional Pediatric Cancer Caucus held a Childhood Cancer Summit on Capitol Hill in Washington, DC. The Summit was kicked-off on September 15th at an evening reception held at the home of Representative Michael McCaul, co-chair of the Pediatric Cancer Caucus, and his wife Linda. The next morning, a breakfast co-hosted by the Children’s Cause and CureSearch preceded a panel discussion led by pediatric cancer experts. The Summit events were unprecedented for the childhood cancer community.

Members of Congress, congressional staff, childhood cancer researchers and advocates attended the breakfast and panel discussion in the House Science and Technology Committee hearing room. In front of a standing-room-only crowd, three panels of experts, including CCCA’s President and Founder, Dr. Susan Weiner, spoke about the issues facing children with cancer, the challenges ahead, and policy solutions. (Click for Dr. Weiner's full remarks).

Members of Congress who participated in the event include Pediatric Cancer Caucus Co-Chairs, Reps. McCaul (R-TX) and Sestak (D-PA), as well as Reps. Jim Moran (D-VA), Jackie Speier (D-CA), Chris Van Hollen (D-MD), Marsha Blackburn (R-TN), Howard Coble (R-NC), Walter Jones (R-NC), and former Rep. Deborah Pryce (R-OH). The congressmen and women had the opportunity to ask questions of the panelists after their presentations.

After two hours of testimony and questioning, Representative McCaul concluded the panel discussion by laying out a legislative agenda for the Caucus. The agenda incorporates key issues to improve treatment and care for children with cancer that CCCA has been pursuing for many years and includes:

• Updating the Best Pharmaceuticals for Children Act to provide incentives for testing the safety and efficacy of drugs in children;
• Creating a Childhood Cancer Study Section at the NCI to review pediatric oncology grants;
• Introducing the Create Hope Act of 2010 (S.3697) in the House to give a transferable priority review voucher to companies who gain approval of a drug for a rare pediatric disease;
• Advancing the Childhood Cancer Survivorship Research and Quality of Life Act (H.R. 2109) to better understand and promote appropriate and improved care for survivors.

The issues that are at the heart of CCCA’s mission -- drug development and survivorship -- are at the core of this legislative agenda, and CCCA will continue to work to advance these initiatives.

Comprehensive Cancer Legislation Introduced in the U.S. House of Representatives Includes Childhood Cancer Survivor Provisions

In the U.S. House of Representatives, the Access to Life-Saving Early detection, Research and Treatment (ALERT) Act (H.R. 6224) was introduced on September 28, 2010 by Representatives Lois Capps (D-CA) and Frank Pallone (D-NJ). Included in this comprehensive cancer legislation are provisions promoted by CCCA to address the needs of childhood cancer survivors.

Specifically, the bill enhances the Centers of Disease Control’s cancer control programs by providing greater focus on childhood cancer survivorship. The legislation will expand and coordinate childhood cancer survivorship programs within the National Institutes of Health. The bill includes a patient tracking system, identification of risk and protective factors related to late effects of treatment, intervention studies for patients and families, grants for research related to disparities in childhood cancer survivorship, evaluation of follow up care, pilot programs to explore model systems of care, and workforce development to ensure access to better trained providers. Funds would also be made available for establishing and operating clinics to provide comprehensive long-term follow up services for childhood cancer survivors, as well as for improving physical and psychosocial care.

The House bill is a companion to legislation introduced in the Senate by the late Senator Kennedy (D-MA) with cosponsors Senators Hutchison (R-TX) and Feinstein (D-CA). The provisions related to childhood cancer mirror those in the Childhood Cancer Survivorship Research and Quality of Life Act (H.R. 2109), a bill CCCA has been consulted on and actively promoting. The current (111th) Congress is in its waning days, making passage of the ALERT Act this year unlikely. However, it is expected that the legislation will be reintroduced in the 112th Congress which will convene in January 2011.

Health Care Reform Implementation -- CCCA Weighs In on Coverage of Preventive Benefits

The new health care reform law (Patient Protection and Affordable Care Act – P.L. 111-148) includes numerous insurance reforms and patient protections designed to enhance coverage for individuals. For one, the new law requires health plans to cover certain preventive services for insured patients without imposing any cost-sharing. The Department of Health and Human Services (HHS) issued regulations to implement this provision on July 19, 2010, and invited comments on the new rules to be submitted by September 17, 2010.

Under the law, the list of preventive services to be covered is based on the current recommendations of the United States Preventive Services Task Force. Examples of covered benefits include blood pressure and cholesterol screening; diabetes screening for hypertensive patients; various cancer and sexually transmitted infection screenings; genetic testing for the BRCA gene; adolescent depression screening; lead testing; autism testing; oral health screening; and counseling related to aspirin use, tobacco cessation, and obesity.

The regulations describe when it is deemed appropriate or inappropriate for a health plan to impose cost-sharing when a patient receives a covered preventive service. For example, if a service is obtained by a provider who is not in the plan’s network of approved providers, the plan is not required to cover it or cost-sharing may be imposed.

In a letter providing comments to HHS, CCCA described the unique health issues and related needs of childhood cancer survivors and questioned whether, under the rules, these patients would have access to appropriate preventive services through follow up clinics or other appropriate institutions that understand the risk profile of survivors. If such clinics and institutions are not in a plan’s network, then the cost incurred by seeking out-of-network preventive services could represent a significant barrier to the care these patients need to stay healthy.

CCCA will continue to monitor health reform implementation and give voice to the needs of children with cancer, their families, and survivors.

A Powerful Story of Survival Heard at CCCA ‘s “Join Our Cause” Event in Chicago

The Children’s Cause gathered with friends and supporters at Phil Stefani’s 437 Rush restaurant in downtown Chicago. Grace Radkin, a survivor of a Central Nervous System Germ Cell Tumor, with a complication of pan-hypopituitarism, inspired the crowd with the story of her cancer journey into survivorship. She described the experience saying, “During treatment, not only has one’s body and emotions been invaded to the extreme, but we must swallow the fact that all of it was ’for our own good.’ In addition, we have encountered, perhaps for the first time if we are a child or young adult, a situation where no one can help us. Our parents can’t get that blood transfusion for us, our best friend can’t take our spinal draw. With this burden comes great fear, loneliness, and a loss of innocence. Imagine the difficulty of a child, teen, or young adult survivor trying to fit back into their world with all of these new emotions and life-lessons….

Going from a National Merit Scholar student to a student with a learning disability continues to be a challenge every day. My brain just doesn’t work the way it used to and this constantly takes me by surprise. I am overwhelmed by the fact that I will take medicine for the rest of my life, and there’s not much research out there about what that might mean for me in 10, 20, or 50 years. I’ve already had both of my hips replaced due to an unusual reaction to medication…. Grief ages us, and I will always grieve for that young woman who did not get to have the college career that she expected, who was told at 19 that she’d never bear children, and who was subject to so much pain and fear. Sometimes I feel like I’ve lost a younger sister or a dear childhood friend.” To see video of Grace's remarks, visit our YouTube page here.

It is CCCA’s mission to ensure that children treated for cancer have access to safer, targeted therapies to reduce both mortality and late effects, and that those who survive get appropriate care to ensure they live longer, healthier lives.

CCCA is grateful to the Platinum Sponsor of “Join Our Cause” Chicago, Abbott Laboratories, for their generosity and support.

CCCA is Moving to Capitol Hill!

CCCA is relocating our Washington DC offices from Silver Spring, MD to Capitol Hill. As of October 1, 2010, we can be reached at:

The Children’s Cause for Cancer Advocacy
750 First Street, NE
7th Floor
Washington, DC 20002
(202) 336-8374
(202) 336-8375

Save the Date for CCCA’s Signature Event in New York City on November 11

On Thursday, November 11, CCCA will hold its signature fundraiser in New York City at the lovely Ana Tzarev Gallery, located at 24 West 57 Street. In New York, CCCA will be joined by former Congresswoman Deborah Pryce (1993-2009) who established and chaired the House Cancer Caucus and founded Hope Street Kids Foundation, in memory of her daughter Caroline, to raise funds for pediatric cancer research. For more information, contact Rebecca Gurvich at rgurvich@childrenscause.org.