Legislative Activity

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Learn about our signature initiatives:

  • H.R. 820/S. 292, The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017

  • A coordinated community campaign that allows individuals and organizations to work together to highlight and educate decision makers and the general public about the crucial need for increased childhood cancer funding.


NCI Meeting Request

August 29, 2014

Lee Helman, MD
Scientific Director for Clinical Research
Center for Cancer Research
National Cancer Institute

Malcolm Smith, MD, PhD
Associate Branch Chief for Pediatric Oncology
Cancer Therapy Evaluation Program
National Cancer Institute

Dear Drs. Helman and Smith:

On behalf of the Alliance for Childhood Cancer, a coalition of 29 national patient advocacy groups and professional medical and scientific organizations working to promote policies to improve the diagnosis, treatment and survivorship care for children and adolescents with cancer, we are writing to request a meeting to discuss two issues:

1) how to communicate the National Cancer Institute (NCI)’s activities and decision-making process around pediatric cancer research funding to the pediatric cancer advocacy community, and

2) potential strategy for development of a national plan for pediatric oncology research and drug development.

We thank you for the openness that you have shown in recent meetings and teleconferences with pediatric cancer advocates. Again, we appreciated the time that you took to provide an extensive briefing on pediatric oncology research during the spring meeting of the Director’s Consumer Liaison Group. We look forward to further collaboration.

Background:
During the past year it has become clear to us that we need to revisit our current agenda for advancing pediatric oncology research in light of the state of the science and the state of available public and private resources. We recognize and support the importance of dedicating resources for basic research but also know that we must ensure adequate funding to support the clinical trials in pediatric cancer critical to move the field forward. Toward the latter goal we appreciate NCI’s recent efforts to address funding gaps.

As you know, we serve, empower and represent families, children and healthcare professionals who want to advocate and make a difference against childhood cancer. Essential to patient advocacy is ensuring clarity of information and clarity of rationale. Currently, many of us in the advocacy community are confused about NCI decision-making related to extramural grant process and prioritization of extramural funding and intramural programs within the current funding limitations and competing demands. We would like to help reduce that confusion through productive communication and education. We will continue to fight for adequate funding levels for the National Institutes of Health (NIH) and in particular the NCI so it can maintain and grow essential programs like the Children’s Oncology Group and Pediatric Pre-Clinical Testing Program, and others that are vital to pediatric oncology research. We are also pleased to learn about and applaud efforts underway at the NCI to leverage genomic information to use in future pediatric oncology clinical trials similar to the adult “MATCH” trial.

That said, we see a basket of programs and activities at the NCI and NIH and a group of proposals in Congress but no master plan and no priority list, for pediatric oncology research, that can serve as the basis for guiding research funding, collaboration among stakeholders, and encourage advocacy, philanthropy and public education. While we want to chase down existing opportunities to beat pediatric cancer we also want to create new opportunities by reducing barriers that may be found in science, medicine, law and policy and increase collaboration among stakeholders.

We look forward to meeting with you, in person, and understanding how you see the big picture of pediatric oncology research and drug development and discussing ways to work together including ways to communicate information important to pediatric cancer advocates.

Specifically, we request the meeting with both of you at the same time on the NIH campus. We anticipate bringing a delegation of less than ten people and would be pleased to furnish a roster in the near future. We would like the meeting to be in September as schedules permit. Upon your acceptance of the meeting we will also be pleased to send a draft agenda for your review and input and we will finalize it together.

Again, we appreciate your dedication to pediatric oncology research and strong communication and dialogue with our community this year.

To schedule this meeting or if you have any questions, please contact Danielle Leach, Co-Chair, via email at leach@alliance4childhoodcancer.org or phone at 571- 388-7113, or Dr. Amy Billet, Co-Chair, amy_billett@dfci.harvard.edu or via phone at 617-632-5640.

Thank you in advance for considering our request.

Sincerely,

Member Organizations
American Academy of Pediatrics
American Cancer Society Cancer Action Network
American Childhood Cancer Organization
American Society of Clinical Oncology
American Society of Pediatric Hematology/Oncology
Association of Pediatric Hematology-Oncology Nurses
Association of Pediatric Oncology Social Workers
B+ Foundation
Children’s Brain Tumor Foundation
CureSearch for Children’s Cancer
Leukemia & Lymphoma Society
National Children’s Cancer Society
Pediatric Brain Tumor Foundation
Society of Pediatric Psychology
Sarcoma Foundation of America
St. Baldrick’s Foundation

Partner Organizations
American Brain Tumor Foundation
American Psychological Association
Kids V Cancer
National Brain Tumor Society
National Coalition for Cancer Survivorship

Cc:
Max Wallace, NCI, DCLG
David Arons, NCI, DCLG
Kelley Landy, NCI Office of Advocacy Relations
Susan Ericksen, NCI Office of Government and Congressional Relations
Peter Adamson, MD, Children’s Oncology Group, Alliance for Childhood Cancer Member

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