AT THE FRONTLINES: A SPECIAL REPORT ON RECENT ACCOMPLISHMENTS OF THE CHILDREN'S CAUSE
Photo: Representatives Chris Van Hollen and Michael McCaul, co-chairs of the Congressional Childhood Cancer Caucus, speak at CCCA's Reception on Capitol Hill
A bill to improve the care and quality of life of childhood cancer survivors received bipartisan support as it was introduced on September 22. CCCA worked with Congressional champions Senators Jack Reed (D-RI) and Kay Bailey Hutchison (R-TX) and Representatives Jackie Speier (D-CA) and Michael McCaul (R-TX) to craft the legislation and secure support for its introduction.
The Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011 marks a major step forward in the delivery of medical and psychosocial care for survivors of childhood cancer. Two-thirds of the now 350,000 childhood cancer survivors in the United States are likely to suffer from at least one late health, cognitive or social impairment as an effect of treatment. One-fourth of survivors will have late treatment effects that are serious or life-threatening, such as second cancers.
The Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011 will respond to the Institute of Medicine report “Childhood Cancer Survivorship: Improving Care and Quality of Life,” on the need to improve how childhood cancer survivors receive follow-up medical care, how to improve their transition from pediatric to adult care, and how to improve quality of life. Special attention will be paid to the needs of low income and minority survivors. The bill proposes pilot programs to evaluate model systems of comprehensive care and identify the most effective ways to provide follow-up care. The legislation emphasizes the importance of psychosocial care for survivors by establishing a workforce of educators, advocates and providers to develop appropriate models and to establish curricula for continuing education.
The House version of the bill (H.R. 3015) also creates grants to establish comprehensive clinics to provide long-term follow up care to childhood cancer survivors. Original cosponsors of the House bill include Representatives Madeleine Bordallo (D-Guam), Marcia Fudge (D-OH), Peter King (R-NY), Tom Latham (R-IA), James Moran (D-VA), Chris Van Hollen (D-MD), and Lynn Woolsey (D-CA).
For years, CCCA has led advocacy efforts to educate members of Congress about the needs of children who survive cancer. CCCA will continue working to increase bipartisan support of the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act in the 112th Congress.
On September 23, the Congressional Childhood Cancer Caucus, led by Representatives Michael McCaul (R-TX) and Chris Van Hollen (D-MD), hosted the Second Annual Childhood Cancer Summit on Capitol Hill. CCCA played a key role in planning this event with its Congressional hosts.
The Summit panel discussion focused on “The Future of Childhood Cancer Drug Development.” Representatives McCaul and Van Hollen emphasized the broad consequences of childhood cancer and the importance of bringing awareness to Capitol Hill. Representative Van Hollen stressed the need to strengthen federal investments in the National Institutes of Health (NIH). Two eight-year-old childhood cancer survivors shared their personal stories of cancer’s impact on their young lives.
Panelists discussed the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA), two important laws that provide incentives and requirements for testing drugs in children. Dr. Peter Adamson, Chair of the Children’s Oncology Group (COG), highlighted ways that BPCA and PREA might be strengthened to help children with cancer to allow earlier initiation of pediatric studies, and how to modernize language in the law to tie pediatric studies to molecular targets or pathways rather than to disease categories. Dr. Ron Portman, Pediatric Lead for Bristol-Myers Squibb (BMS) and Chair of BIO’s Pediatric Drug Development Committee, noted the obstacles to pediatric oncology drug development and that additional legislative initiatives outside of BPCA and PREA may be needed to stimulate research for smaller populations of children with cancer and other rare pediatric diseases. Dr. Portman spoke to the success of BPCA and PREA and called for permanent authorization of the programs.
Dr. Eugenie Kleinerman, Head of the Division of Pediatrics at MD Anderson Cancer Center, suggested a strategy to get new therapies to children with cancer by improving the design of pediatric oncology clinical trials. She advocated for allowing children to receive higher dosages of new drugs earlier in the clinical trials process in order to speed their approval of agents to treat childhood cancer.
Panelist Nancy Goodman, Executive Director of Kids v Cancer, provided an overview of the Creating Hope Act, legislation that would provide an incentive to pharmaceutical and biotech companies. Companies that invest in the development of completely new drugs for pediatric cancer and other rare diseases could receive a voucher allowing another of its drugs to receive Food and Drug Administration (FDA) rapid or “priority” review. Companies could also sell their priority review vouchers to other firms and potentially gain substantial reward for their initial investment in a rare pediatric disease. Summit panelists expressed strong support for the Creating Hope Act as a new and potentially important strategy to increase pharmaceutical industry interest in the development of new agents for children with cancer.
For a transcription of the presentations, please visit here.
CCCA brought together other childhood cancer organizations as partners in hosting a Capitol Hill reception for Members of Congress, Hill staff, and childhood cancer advocates the evening before the Childhood Cancer Summit.
Over 130 guests provided a unique opportunity for policymakers to engage directly with advocates from all over the childhood cancer community. Members of Congress attended, including Michael McCaul (R-TX), Jackie Speier (D-CA), Chris Van Hollen (D-MD), John Carney (D-DE) and Henry Cuellar (D-TX).
CCCA’s Executive Director Maureen Lilly opened the program by thanking Representatives Speier and McCaul for their leadership on the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act, which was introduced in both the House and Senate that afternoon. Representatives McCaul, Speier, and Van Hollen offered remarks on key legislative and regulatory priorities related to childhood cancer, including the childhood cancer survivorship bill and the voucher incentive proposal. Joe Fay, Executive Director of the Children’s Brain Tumor Foundation, closed the program.
CCCA thanks the co-hosts of this exciting event: The Children’s Brain Tumor Foundation, Leukemia & Lymphoma Society, Mattie Miracle Cancer Foundation, St. Baldrick’s Foundation and The EVAN Foundation.
People Against Childhood Cancer (PAC2) held its second workshop, bringing together over 55 leaders and activists from the childhood cancer community on September 22. Representatives from more than 30 childhood cancer organizations came together with the shared goal of collaborating more effectively in the fight against childhood cancer.
Dr. Peter Adamson, Chair of the COG, commented on the newly formed Children’s Oncology Group Foundation. Nancy Goodman of Kids v Cancer also discussed the Creating Hope Act and its priority voucher proposal (see above). One highlight of the workshop was a breakout session on advocacy. CCCA was asked to take a leadership role and coordinate with other organizations to create a policy agenda based on the session in order to help guide activities of the PAC2 collaboration.
PAC2 provided a fresh opportunity for community collaboration and open discussion among the many small and large childhood cancer foundations and support organizations.
Friends are invited to gather in Chicago on Tuesday, October 18 at Old Town Social gastro-pub from 6:00 – 8:00 p.m. The evening will feature appetizers and a tasting of seasonal craft brews, raffle prizes and a silent auction. Old Town Social is located at 455 West North Avenue. Tickets for the Chicago event are just $25 and can be purchased at www.childrenscause.org/donate.
CCCA’s signature New York City fundraiser is taking place on Thursday, November 10, from 6:30-9:00 p.m. at the beautiful Bohemian Benevolent & Literary Association, located at 321 East 73rd Street. The annual event brings together over 200 survivors, families, researchers, advocates and supporters for the cocktail reception and silent auction. Leonard Rosen will be honored for his long-time commitment to CCCA and his support for children with cancer. Please visit here to purchase tickets.
For more information on attending or sponsoring either of these events, please contact Maureen Lilly at firstname.lastname@example.org.