February Bulletin: State Advocacy Opportunities and more

Announcing New State Advocacy Initiatives

In childhood cancer advocacy, we often look to Washington, DC. But many issues affecting children with cancer and their families are best addressed, with more impact, at the state and local level. 

There are scores of childhood cancer advocates working in state capitals pushing for better treatments, access and care for patients, families and survivors. To support those advocates, Children’s Cause has launched a state advocacy program offering “air cover” and coordination to those working in their state capitals. In a new section of our website, we’re highlighting state legislation, pending bills, resources and models to help give state advocates the ammunition needed to add your voice to existing efforts – or to start one of your own. 

First up, we've launched action alerts in two states, New York and Pennsylvania, on the issue of remote technology for critically ill students. Remote technology eliminates the isolation that kids with life-threatening conditions like cancer face while missing school to undergo treatment. Maryland enacted similar legislation called Peyton's Law, named after a girl with cancer who used a "telepresence robot" to stay connected to her classroom while undergoing radiation therapy.

Stay tuned about these and other bills around the country by checking back often at childrenscause.org/state-advocacy

Read More: 
Blog post by CEO George Dahlman

College Scholars Program: Application Deadline March 31

The Children’s Cause for Cancer Advocacy is again offering an opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive a scholarship of $2,000 via our College Scholars Program. The deadline to apply is March 31, 2019.

Our College Scholars Program includes a requirement of completing a childhood cancer advocacy project of the scholar’s choice. Projects could be as extensive as a summer internship in our DC office to something more local, like organizing an awareness event in your hometown or mobilizing other students at your school in a letter-writing campaign. Your creativity is encouraged, and you’ll receive mentorship and support from the CCCA team toward completing your chosen project. 

Learn more and apply here.

International Spotlight on Childhood Cancer

This year's International Childhood Cancer Day (February 15th) focused on an awareness campaign around palliative care and reducing the global mortality rate of pediatric cancers. Organized by Childhood Cancer International (CCI), the 2019 campaign built on a new World Health Organization initiative to eliminate all pain and suffering of children fighting cancer globally and to achieve at least 60 percent survival for children with cancer by 2030. 

Following International Childhood Cancer Day, a new study was published in Lancet Oncology that used a simulation model to estimate that almost half of all children with cancer globally are never even diagnosed. The researchers found that an estimated 49% of childhood cancers in south Asia and 57% in western Africa are likely undiagnosed -- and untreated.

Action Days is March 26 & 27: Still Time to Register

There's still time to sign up to join the Children's Cause and the Alliance for Childhood Cancer for the 8th Annual Childhood Cancer Action Days on March 26th and 27th in Washington, D.C.

Issues and advocacy training will be held on Tuesday, March 26th at the Renaissance Arlington Capital View Hotel in Arlington, Virginia. The following day will include pre-arranged meetings with Members of Congress and their staff on Capitol Hill to discuss important childhood cancer issues currently before Congress.

Learn more and register.

Register for our March 27th Webinar

Registration is now open for our March 27th webinar, where we will revisit the externally-led, FDA-approved Patient Focused Drug Development (PFDD) meeting held in September, focused on chemotherapy-induced hearing loss in pediatrics. In this March webinar, we'll provide an update on progress since that meeting -- and next steps. 

For those who were able to join us in September, we invite you to join us again for this follow-up presentation, where we'll share highlights from the formal Meeting Report. If you were unable to join us for the original meeting but you're interested in the topic of chemo-induced hearing loss, please know that we'll start with a recap to get you up-to-speed. Register here.

Our last webinar focused on the latest ground-breaking developments in childhood cancer research, with a specific focus on immunotherapy and precision medicine. It was an hour jam-packed with valuable information, so we've got highlights on our blog -- plus the full recording: 
Catch up on what you missed.

Trump Administration Calls for $500 Million Boost for Childhood Cancer Funding

Earlier this month, President Trump included childhood cancer in his State of the Union address, calling for a $500 million increase in childhood cancer funding over the next decade. 

A follow-up conference call by the Administration revealed that this funding will likely be related to a big data initiative that expands on existing efforts to share and aggregate childhood cancer data. We are looking forward to seeing the Administration's budget for a more complete picture, which is expected to be delivered to Congress on March 12.

We feel encouraged that the Administration has made this a priority, recognizing the toll of childhood cancer and the critical importance of addressing its impact on families across the country. We'll work diligently with Congress to ensure that funding for childhood cancer research and access is included in the FY 2020 budget.

Take Action in the New Congress

Legislation that we support is starting to be introduced - or re-introduced - in the new Congress. So we're introducing our 2019 Action Center, where you can learn about pending legislation that could have an impact on children with cancer -- and take action to get these bills passed into law:

Jessica Kean
January Bulletin: What's New in 2019

Last Chance to Register for January 30th Webinar
Join us at 3pm Eastern time tomorrow for Hope on the Horizon, a free webinar featuring information about the latest ground-breaking developments in childhood cancer research. We are fortunate to be joined by a pediatric oncologist, a CAR-T researcher, and a pharmaceutical representative.

We hope you'll join us for this educational and informational hour. Sign up now.

Even if you can't make it at the scheduled time, we encourage anyone interested in this topic to register so you receive the recording afterward.

Introduce Yourself to the New Congress
The kick-off of the 116th Congress was overshadowed by the drama of the partial government shutdown, which finally came to a (temporary) end on Friday.

If you haven't had a chance yet, we ask that you take a moment to introduce yourself to your Members of Congress and share with them your childhood cancer story. By making these early introductions, you set the stage for ongoing communications with your Member — and make sure they know early on that constituents in their district care deeply about children with cancer and childhood cancer survivors.

We’ve made this introduction easy by providing the template and form on our website: take action here.

If you have existing relationships with any Member of Congress, please take a moment to let us know. Identifying our advocates with Congressional contacts helps us do better targeted advocacy on key issues that impact kids with cancer.

Action Days is March 26 & 27: Registration Now Open
You're invited to join the Children's Cause and the Alliance for Childhood Cancer for the 8th Annual Childhood Cancer Action Days on March 26th and 27th in Washington, D.C.

Issues and advocacy training will be held on Tuesday, March 26th at the Renaissance Arlington Capital View Hotel in Arlington, Virginia. The following day will include pre-arranged meetings with Members of Congress and their staff on Capitol Hill to discuss important childhood cancer issues currently before Congress.

Interested participants are encouraged to register early. There will be a limited number of assistance scholarships for those whose representatives are members of the House or Senate Appropriations Committees. Scholarship applications are available here and are due on February 22nd: 

STAR Act Implementation Update
The Childhood Cancer STAR Act was signed into law last year. This year, we start to see the real impact of all of our hard work!

Earlier this month, the National Cancer Institute announced that they are accepting applications in response to a funding announcement titled “Improving Outcomes for Pediatric, Adolescent and Young Adult Cancer Survivors” (RFA-CA-19-033)

This Funding Opportunity Announcement (FOA) is directly associated with the STAR Act -- and the Biden Cancer Moonshot Initiative. This FOA requests applications from investigators to develop and test interventions that prevent, mitigate or manage adverse outcomes in pediatric and/or AYA cancer survivors and/or evaluate models of care that strengthen coordination, continuity, and quality, or that reduce access barriers to needed services including follow-up care, and that improve outcomes across the survivor's lifespan.

NCI plans to provide a $4.8 million total annual set aside for the RFA ($25M 5-year total). The RFA includes two receipt dates, March 2019 and January 2020. Additionally, NCI is exploring opportunities for a future program announcement that will continue to promote areas highlighted in the STAR Act and solicit both observational and intervention studies to address the full spectrum of research priorities in pediatric/AYA cancer survivors.

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Coming Soon: 2019 College Scholars Application
The Children's Cause will begin accepting applications for our 2019 College Scholars Program in early February. If you or someone you know may be interested in applying, fill out our interest form to be the first to know when the application is available. 

Our College Scholars Program is an annual opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive an academic scholarship of $2,000 for Fall 2019.

Quick Links | Recommended Reading

  • A new report on cancer trends over the past 25 years shows that childhood cancer incidence rates have increased by 0.7% per year since 1975 but death rates have steadily declined. Still, an estimated 1,190 children diagnosed this year will not survive. (ABC News, 1.8.19)

  • A recent report from Georgetown's Center for Children and Families revealed an alarming healthcare trend: for the first time in nearly a decade, the number and rate of uninsured children in the United States increased. (CCF, 11.28.18)

  • Our take on the ACA Ruling in Texas v. US: What does it mean? (CCCA Blog, 12.21.18)

  • A new study finds that only a minority of pediatric palliative care outcome measures include patient-reported outcomes and less than a third of the evaluated studies included quality of life measures, defined as “having fun or experiencing events that added meaning to life." (Pediatrics, 1.19)

Through January 31, 2019, AmazonSmile will donate 15% the purchase price of new print magazine subscriptions to your charity of choice, a significantly higher percentage than the typical 0.5% that we receive from AmazonSmile purchases!

Use this link to ensure that Children's Cause receives this Amazon donation with your purchase: https://smile.amazon.com/b?node=18541223011

It's tax time: Do you need documentation?
If you need a tax receipt for your 2018 donations to the Children's Cause, please contact Charlcie Steuble at csteuble@childrenscause.org.

Jessica Kean
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