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  • 15 Dec 2014 7:10 PM | Anonymous

    Childhood Cancer Advocates Meet with Leaders of the National Cancer Institute


    Gregory J. Aune, MD, PhDMember, NCI Council of Research Advocates (NCRA)


    Danielle Leach, MPACo-Chair, Alliance for Childhood Cancer

    Building on the momentum of so many community activities from the early summer and September, the childhood cancer advocacy community has witnessed an unprecedented effort by the National Cancer Institute (NCI) to establish a productive dialogue between advocates and the Institute’s leaders in Bethesda.  On November 5th, NCI Director Dr. Harold Varmus and other leaders of the National Cancer Institute met with childhood cancer advocates on the National Institutes of Health campus.  Advocate and parent Jonathan Agin had proposed the meeting at the White House event when he introduced himself to Dr. Varmus.  For a full review of the circumstances leading up to the meeting, please read Mr. Agin’s blog entry on the Huffington Post.  I was invited as the NCRA representative and Danielle Leach as Co-Chair of the Alliance for Childhood Cancer.  In addition to his role in initiating the meeting, Jonathan is a member of the Coalition Against Childhood Cancer (CAC2).

    Dr. Varmus began the meeting by reviewing four childhood cancer specific activities that should energize our community:

    ·         The Pediatric MATCH trial.  A repeat of what he discussed at the White House meeting, including additional thoughts on how this trial will benefit research efforts directed at pediatric cancer. We also discussed the need for education, because it is vitally important that the advocacy community understand the goals of this trial.

    ·         A genomics workshop.  He outlined the current efforts to bring together scientists and advocates for a meeting focusing on pediatric cancer genomics research in early 2015. NCI scientists hope that this meeting will help identify key areas in the field of pediatric precision medicine where researchers might focus.  

    ·         Provocative Questions Initiative.  Dr. Varmus discussed the NCI provocative question initiative and how it relates to childhood cancer.  While it is his opinion that many of the existing questions are relevant to pediatric cancer, he is open to the idea of holding pediatric-focused provocative question workshops at two to three strategic sites across the country. 

    ·         The NCI bypass budget.  A specific narrative section on childhood cancer in the upcoming NCI bypass budget was released in early December: http://www.cancer.gov/aboutnci/budget_planning_leg/plan-2016/cancer-research.

     The meeting then turned to a discussion of some of his additional thoughts on childhood cancer.  First, he stressed that talented individuals with good ideas drive success in research.   Therefore, it would be prudent for the advocacy community to consider ways that we can attract the most talented researchers into our field.  As we continued our discussion, it became evident that there will be up to four meetings sponsored by the NCI in 2015 focused on pediatric cancer, an unprecedented effort to establish and foster a productive dialogue and bring the childhood cancer advocacy community together.  As we left the meeting, the positive steps being taken encouraged us all and the statement made by Dr. Varmus best exemplified our hopes for the future -- “we can and must do better in addressing the needs of childhood cancer patients.”

    So how do we as an advocacy community move forward? Collaboration is key and transparency within our community is critical as we move ahead.  We believe that we have reached an important point in our collective efforts and how we respond in the coming months, will determine our path for possibly years to come.  As we move ahead, it is important for us to remember that the ideas we present as priorities for our cause will be more effective if we speak with a collective voice when possible. Join existing coalitions like the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer to participate in coordinated community efforts. Work with existing coalitions to ensure we are communicating effectively with each other. We are here and are willing to help any way that we can: Vickie Buenger from CAC2, Dr. Amy Billet and Danielle Leach from the Alliance, and myself. We must strive to develop a coordinated channel to the NCI Office of Advocacy that will promote an ongoing and continued productive dialogue with the NCI. 

    Most important, we must remember that this is a marathon and not a sprint.  We must focus harder than ever on collaboration.  We must work diligently to develop a true partnership with the NCI. Advocacy groups should refocus their efforts to create a coordinated policy agenda for childhood cancer.  In addition, we must continue efforts to raise private sector dollars to fund new talent and identify the most innovative ideas.  This approach could prove fruitful in the long run if we focus on achievable goals that ultimately align with those of the NCI.   For in the end we all have the same aspiration; ending all suffering and death from childhood cancer.  We encourage communication with us via the NCI Office of Advocacy Relations as we continue to build our partnership with the NCI.  Please feel free to communicate with us as the NCI begins planning future meetings focused on childhood cancer.

    The opinions expressed in this article are the authors' own 

  • 11 Apr 2014 10:40 AM | Anonymous

    On April 4, 2014 the Alliance for Childhood Cancer convened an issue briefing for congressional staff on “Pediatric Cancer Registries: A Cornerstone of Cancer Care & Research.”   Speakers included Elizabeth Wells, MD, of the Department of Neurology and The Brain Tumor Institute at Children’s National Medical Center; and Jennifer Cullen, PhD, MPH, Director of Epidemiologic Research at the Department of Defense Center of Excellence’s Center for Prostate Disease Research.

    In her presentation, Dr. Wells stressed the value of using outcomes research to determine potentially effective therapies, and noted that cancer registries “provide appropriate methodology for outcomes research.”  She also pointed out that studies based on outcome analysis “have really changed the way we do research,” and offered a list of six specific benefits that registries offer, including:

    • Promoting research that is not achievable through single institutions or consortium-based studies that are currently underway;
    • Providing a resource for the scientific community including clinical and translational researchers;
    • Expanding the understanding of clinical and treatment factors predisposing to cancer-related morbidity and mortality;
    • Impacting care delivery and investigations for current and future cancer patients;
    • Promoting cancer survivor health, well-being and appropriate health utilization review; and
    • Spurring future research into novel agents and techniques to maximize survival, spare acute toxicity, and late effects

    Dr. Cullen’s presentation included a description of her daughter’s diagnosis, struggle, and ultimate loss to medulloblastoma over a period of 13 months in 2011-2012. She noted that registries allow for “agnostic research” that holds promise, and referred to the registry for adult cancers at Walter Reed National Military Medical Center as a “national treasure” which should be replicated for childhood cancer research.   

    Dr. Cullen also pointed to the Lifetime Cohort Study – one of several large-scale cohort studies created by St. Jude Children’s Research Hospital to characterize the occurrence and risk profiles for long-term late effects of therapy – as a beneficial program for childhood cancer research. 

    HR 2607/S 1251 – the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act – was also brought up during the briefing.  This bipartisan bill has been introduced in both chambers of Congress, and includes funding that will help improve the tracking of childhood cancer cases by state cancer registries, and will expand childhood cancer research by establishing new biorepositories. 

    Passage of the bill, which is broadly supported by advocates in the cancer community, would also result in a General Accountability Office study to investigate barriers to developing new drugs for kids with cancer.  Reps. Mike McCaul (R-TX) and Chris Van Hollen (D-MD) are the primary sponsors of HR 2607 in the U.S. House of Representatives and Senators Jack Reed (D-RI) and Deb Fischer (R-NE) are the primary sponsors of S 1251 in the U.S. Senate. 

    Founded in 2001, the Alliance for Childhood Cancer is a forum of 29 national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, D.C., to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.

  • 21 May 2013 1:59 PM | Caitlin Demchuk (Administrator)
    On May 14th, the Alliance sent a letter of support  for the Childhood Cancer Survivors’ Quality of Life Act.
  • 09 May 2013 10:16 AM | Caitlin Demchuk (Administrator)

    Registration has closed for Childhood Cancer Action Days.  Please contact Karen McKinley at karenlmckinley@gmail.com if you are interested in being placed on the waiting list.

  • 14 Mar 2013 3:36 PM | Caitlin Demchuk (Administrator)

    The Alliance for Childhood Cancer, is pleased to announce that this year’s Childhood Cancer Action Day in Washington, DC is scheduled for June 17-18, 2013. 

    This year, members of the Alliance for Childhood Cancer will once again host a two-day event that includes issues and advocacy training, and pre-arranged Capitol Hill visits with Congressional representatives and their staff.  Our goal:  to provide the childhood cancer community - parents, children, and others - with the opportunity to visit Capitol Hill and advocate for the important childhood cancer issues currently before Congress.


    Register Now! Childhood Cancer Action Day in Washington, DC June 17-18, 2013

    •   Monday, June 17, 1:00 – 6:30 p.m. training and issues presentation 
    •          Tuesday, June 18, 8:00 a.m. – 5:00 p.m. Kick-off and Hill visits 
    •        Event Participation: Online registration opens Monday April 15th 
    •   Hotel Reservations:  A block of rooms has been reserved at the Hotel Residence Inn Old Town South Carlyle, at a room rate of $218 per night.  The hotel will accept reservations on a first-come first-served basis. Phone: 703-549-1155
    •          Transportation to/from Childhood Cancer Action Day is the responsibility of those attending.
    •         More information to follow.

    This year, the training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. ASCO is located just a few subway stops from Ronald Reagan National Airport, and the hotel is across the street from ASCO.  The Alliance will provide buses to and from Capitol Hill on the 18th for Congressional Visits.


  • 28 Feb 2013 4:27 PM | Caitlin Demchuk (Administrator)

    In a press release issued today, the Alliance for Childhood Cancer calls on Congress to stop the devastating cuts to non-defense discretionary spending scheduled to go into effect on March 1, 2013. These cuts, known as sequestration, or any other across-the-board cuts, would slow the pace of progress in childhood cancer research and negatively impact children currently being treated around the country. 

  • 14 Nov 2012 1:50 PM | Amanda Schwartz (Administrator)
    In a letter sent today,the Alliance for Childhood Cancer calls on Congress to stop the devastating cuts to non-defense discretionary spending scheduled to go into effect on January 2, 2013. These cuts, known as sequestration, or any other across-the-board cuts, would slow the pace of progress in childhood cancer research and negatively impact children currently being treated around the country. 
  • 05 Nov 2012 12:55 PM | Amanda Schwartz (Administrator)

    As a requirement of the FDA Safety and Innovation Act, the FDA has begun efforts to improve communication with patient groups in order to improve the FDA’s understanding of patient perspectives and needs in the drug development process.  As part of this Patient-Focused Drug Development Initiative, the FDA published a preliminary list of 40 nominated disease areas, including cancer and young patients, that the agency will reduce to 20 disease areas after public comment.  Each of the 20 disease areas will receive a public meeting, report, and strategic plan recommending steps to improve the agency’s understanding and consideration of patient needs. In order to encourage the FDA to maintain cancer and young patients as one of the disease areas of focus in this initiative, the Alliance for Childhood Cancer submitted a letter to the agency highlighting the need to better address the needs of childhood cancer patients.

  • 24 Aug 2012 10:23 AM | Amanda Schwartz (Administrator)
    In a letter to Rep. Louise Slaughter, the Alliance offered its support for H.R. 6207, legislation to establish a Task Force on Environmental Health and Safety Risks to Children. At sensitive points in child development, environmental exposures can have especially harmful effects. It is important that we fully understand those effects so that we can treat and prevent them whenever possible. Cancer is the number one cause of death by disease in children and adolescents. Reducing environmental toxins could help reduce these cancer incidences.  We encourage the task force to make pediatric cancer a priority in its activities.
  • 14 Jun 2012 2:31 PM | Amanda Schwartz (Administrator)
    In a letter sent today, the Alliance for Childhood Cancer asked that pediatric cancer language included in the House version of FDA reform legislation be included in the final version now being worked on through informal conference resolution.
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Alliance for Childhood Cancer

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