November Bulletin: Preparing for a New Congress


A Look Ahead at the 116th Congress


As we look toward 2019, we are shaping up our policy agenda for the new Congress - which begins January 3rd.

Immediately following the midterm elections, we shared with you our policy analysis of how this new Congress may impact issues related to childhood cancer and healthcare -- and some of the policy priorities that will guide the work we do in the year ahead. If you missed it: 2019 Policy Preview.

New Members of Congress have continued their "freshman orientation" this week, with ongoing tours, briefings and work sessions. Once they've taken office in January, we'll have an action alert to provide an orientation of our own -- an orientation of childhood cancer issues. We'll be asking you to join us in introducing yourself to your Members of Congress and sharing your story, which will be especially important for advocates who have a new incoming Representative or Senator.

In the meantime, we invite and encourage you to remember your Members of Congress when you send your holiday cards. It's a small but thoughtful action step you can take this holiday season to set the stage for your continued communication in the 116th Congress.

As we continue to refine our agenda and priorities, we'll keep you updated. Please be sure you're following us on 
Facebook or Twitter for the most up-to-date news and action items.


Children's Cause Presents Rosen Award to Julia Rowland

The Leonard M. Rosen Memorial Research Award is presented annually at the Children’s Cause Cocktail Reception in New York City. Earlier this month, the Children’s Cause was proud to present the 3rd Annual Rosen Award to Julia Rowland, PhD, the Senior Strategic Advisor at the Smith Center for Healing the Arts.

Dr. Rowland was formerly the Director of the Office of Cancer Survivorship at the National Cancer Institute, and she is widely recognized as a national and international scholar, researcher and leader in the psychosocial aspects of cancer care broadly and cancer survivorship specifically.

As a recipient of the Leonard M. Rosen Memorial Research Award, Dr. Rowland receives $10,000 in recognition and support of her work. In accepting this award, she described how these funds will help support her current endeavors: “I’m hoping to use the Rosen Award funds to conduct demonstration projects at a handful of sites that will examine how [the Standards for Psychosocial Care] can be used to enhance the capacity to deliver high quality care, the ultimate goal being to improve the psycosocial care available and delivered to childhood cancer survivors and their families.”

We were also honored to be joined by Dr. Peter Adamson, Chair of the Children’s Oncology Group, who spoke about the changing landscape of treatment with advances in immunotherapy.

We thank Dr. Rowland and Dr. Adamson for joining us and sharing their insights into the past, present and future landscape of childhood cancer. Visit our blog to read some of their specific remarks around survivorship and immunotherapy.

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COG Updates Survivorship Guidelines

The Children's Oncology Group recently updated their Long-Term Follow-Up Guidelines (version 5). This is the gold standard resource for healthcare professionals who provide care to the nation's approximately 500,000 survivors of childhood cancer.

We strongly encourage families and survivors to be familiar with these COG guidelines, in order to be an informed and empowered advocate for yourself or your child. But please take note that COG recommends that survivors review these guidelines with the assistance of a knowledgeable healthcare professional -- as these are written for a healthcare audience.

Identifying State-Level Legislative Initiatives

We are working to identify legislation at the state level to engage around with partners and advocates in 2019 -- and we need your input! If you have knowledge of upcoming legislation in your home state or a desire to help lead grassroots action around a particular issue, please take a moment to let us know here.

We anticipate that new governors in some states could influence Medicaid expansions across the country, including Kansas, Maine and Wisconsin. (States considered and approved Medicaid expansion ballot initiatives in three states - Utah, Idaho and Nebraska). There's a whole host of other state-level issues that could have a real impact on kids with cancer and survivors, including fertility preservation coverage, drug pricing transparency, technology grants for remote school attendance, and much more.

We count on you to be our eyes and ears - and boots on the ground - on the local and state level. Please help guide our state-level agenda with this quick four-question survey.

Quick Links | Recommended Reading

  • FDA granted accelerated approval of Vitrakvi, the first drug developed to treat cancer based on its genetic characteristic, not location in the body. Vitrakvi is approved for adults and children with metastatic solid tumors whose other treatment options have run out: FDA Approves Vitrakvi for All Cancers with Specific Gene Mutation (CancerHealth, 11.26.18 / NBS News, 11.27.18))

  • An update from the NCI's Dinah Singer, Ph.D., on the Cancer Moonshot - including the work being done in pediatrics: The Cancer Moonshot, Moving from Planning to Research (NCI's Cancer Currents Blog, 11.19.18)

  • At a recent panel discussion, experts debated how to make cancer drugs more affordable and ease the financial burden for patients and caregivers: Cancer Drug Pricing Debate (CURE, 11.17.18)

  • A recent survey of survivors finds that many children are not meeting recommendations for exercise, diet and sleep patterns at three-years and five-years post-diagnosis: Kid Cancer Survivors Fall Short on Healthy Lifestyles (MedPageToday, 11.14.18)


Thank you to those who made a donation this week in honor of #GivingTuesday, the national day of giving that follows the shopping frenzy of Black Friday and Cyber Monday.

#GivingTuesday was the official launch of our year-end fundraising campaign. This holiday season, we'll be sharing the dreams of children with cancer and survivors -- and asking for your help to support our life-saving advocacy work so kids can grow up and chase those dreams.

Check one more thing off your holiday list: Make your gift now.

Jessica Kean