January Bulletin: What's New in 2019
 
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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: 
https://www.surveymonkey.com/r/79TPMWN



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
 
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A Look Ahead at the 116th Congress

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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.


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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)


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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
October Bulletin: The Latest in Childhood Cancer Policy & Research
 
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Take Action to Improve Care for Kids on Medicaid

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Lawmakers have the opportunity to improve care for kids with complex medical conditions by supporting two pieces of legislation currently making their way through Congress: the Accelerating Kids’ Access to Care Act and the Advancing Care for Exceptional Kids Act

We estimate that approximately 1/3 of the nation's children with cancer are covered by Medicaid. Under the current Medicaid system, parents of children with multiple, life-threatening disabilities struggle to coordinate the complex care of their kids.

We've got more information about these two pieces of legislation on our website, along with opportunities for you to take part in our action alerts on these bills to easily send letters to your Members of Congress seeking their support.


Small change for you: Game changer for us.

New this month, you can help children with cancer, survivors and their families just by donating your spare change! The RoundUp App securely and automatically "rounds up" the change from your credit and debit card purchases. For example, if you buy a cup of coffee for $2.75, a quarter would come to us in support of our fight against childhood cancer.

The Round-Up App is available through the Apple and Google Play stores. You can even set up a monthly cap for a max donation, if you'd like. Learn more at www.childrenscause.org/roundup.

The consistency of this kind of monthly support - even through small amounts of a few cents at a time - allows us to better plan for the future. Thank you for your continued support and generosity.


Managing the Financial Stress of Childhood Cancer

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Thank you to Kathleen Gallagher of the Patient Advocate Foundation for manning our shared poster presentation at this month's 2018 ASCO Quality Care Symposium!

The data presented comes from a joint survey conducted last year by the Children's Cause and the Patient Advocate Foundation (PAF). The survey sought to identify financial challenges in access to care, such as insurance barriers, coverage limitations and denials, high copays and extraordinary out-of-pocket costs.

A total of 343 respondents completed the 2017 survey, evenly split between caregivers and survivors. 

  • Among caregivers, one-third reported insurance denials for treatment, and 44% reported some level of financial hardship. Among the 44% of respondents reporting financial hardships, 4-in-10 had annual out-of-pocket costs exceeding $5,000. Beyond medical expenses, respondents identified employment and transportation costs, with 87% reporting compromised work schedules and over half reporting trouble getting their child to and from appointments.

  • For survivors, 27% reported not receiving follow-up care at a late effects clinic, with 1-in-4 reporting that their cancer care impacted their ability to pursue higher education and 30% reporting that the cost of their medical care impacted their career course or job choice.

We have just completed another round of surveying families and will be incorporating this new data to build upon what we learned last year and continue to refine our policy efforts accordingly.

Abstract from ASCO Meeting Library→
Poster Presentation →



vote for kids on November 6th

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Election Day is just one week away, on Tuesday, November 6th. The 116th Congress is likely to tackle several issues that could have a big impact on children with cancer and childhood cancer survivors, so we hope you'll make your voice heard through your ballot. 

If you consider yourself a "health care voter," the non-partisan Kaiser Family Foundation provides this overview of Key Issues and Races to help you be a more informed voter around issues like pre-existing conditions and Medicaid expansion. 

To double-check your state's voting policies or your registration status, visit the Rock the Vote resource guide.

The Children's Cause is tentatively planning to hold a webinar in early December to explore how the outcome of the Midterms may impact the next legislative session. Stay tuned for more details as we have them available!


 
Jessica Kean