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.

COG Guidelines v5.png

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
October Bulletin: The Latest in Childhood Cancer Policy & Research

Take Action to Improve Care for Kids on Medicaid


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

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


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


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
September Bulletin: Awareness, Advocacy, Action

Chemo-Induced Hearing Loss Meeting Spotlights Critical Quality of Life Issue


We were proud to co-host an Externally-Led Patient Focused Drug Development (EL-PFDD) workshop on chemotherapy-induced hearing loss in pediatrics, in partnership with Momcology, Mattie Miracle Cancer Foundation, and the Children’s Brain Tumor Foundation. This half-day meeting featured a series of facilitated panel and audience discussions focused on providing the FDA with patient perspectives on a survivorship issue with a significant unmet need and quality-of-life burden. 

This EL-PFDD was an incredibly empowering day for childhood cancer survivors and family members, giving them a long-deserved spotlight to share their very personal stories about the severe impact that hearing loss has had on their lives and their families. Approximately 200 stakeholders participated, either in person or via webcast, and we heard over and over again about the impactful and emotional power of this event.

You can find the full webcast recording here and photos from the workshop here. In the coming weeks and months, we’ll share more outcomes from this meeting, including a formal report.

Appropriations Bill Includes Childhood Cancer Priorities, including GAO Report Championed by CCCA

At the conclusion of the Childhood Cancer Summit earlier this month (more on that below), Representative Michael McCaul shared breaking news that the House and Senate had reached a conference agreement to fully fund the STAR Act in FY2019, a huge win for the community and a testament to the strength of our combined advocacy efforts.

He was referring to a "minibus" appropriations bill, passed by both chambers, that provides funding for the Labor, Education and Health and Human Services departments as well as several other agencies. The bill awaits signature by the President. 

The measure contains several priorities of the Children's Cause for Cancer Advocacy:

  • Funding for the National Institutes of Health at $39 billion -- an increase of $2 billion, which will include cancer research;

  • Full funding for the STAR Act, which was passed with unanimous bipartisan support this summer; and

  • A directive to conduct a GAO report, originally contained in the STAR Act but deleted in the final hours of STAR consideration. The GAO report would evaluate the barriers to obtaining medical care for survivors of childhood cancer and provide recommendations to improve access for these individuals, with a focus on palliative and psychosocial care.

The Children's Cause worked tirelessly on the above items with a particular focus on the GAO report, and we thank Congress for including it in this spending bill.

NIH Director Keynotes Childhood Cancer Summit


The Congressional Childhood Cancer Caucus's 9th Annual Summit on Capitol Hill brought the community together for an opportunity to hear from Representatives Michael McCaul and Mike Kelly, as well as Dr. Ned Sharpless, Director of the National Cancer Institute.

Dr. Sharpless shared updates on the Cancer Moonshot, immunotherapy breakthroughs, and developments in big data. He emphasized the huge achievement of a $2 billion boost in NIH funding in FY2019, calling it a "testament to the broad bipartisan support for cancer research but it's also a real testament to [the advocacy community.]"

Director Sharpless also put a strong emphasis on the importance of basic science, which is defined by the NIH as 'research that supports a broad understanding of human behavior and biology.' Dr. Sharpless remarked that NIH has to "double down and continue to invest in basic science. That’s where the really good ideas come from. They start in the lab.”

On the STAR Act, Dr. Sharpless thanked childhood cancer advocates for this "magnificent achievement," calling it "a real tool tor the National Cancer Institute. It gives us a set of goals and powers that make our ability to treat and study and work on and actually influence the outcome of childhood cancer much greater." On implementation, he said there will now be new pediatric oncology voices represented on relevant boards and there will be a new emphasis on biorepositories and banking samples.

CureFest and More


We joined with families and organizations from around the country for CureFest, an annual event that Children's Cause is proud to help support as a bronze sponsor. If you missed CureFest, there was fantastic live coverage of the many events broadcast on their Facebook page. We encourage you to check out the photos and videos -- and make plans to join next year. Organizers have already announced that the dates will be September 20-22, 2019.

In other notable news, we congratulate our colleagues who receivedRareVoice Awards at the 7th annual celebrate on September 12th. We also thank and recognize Hyundai Hope on Wheels for their 20th year of supporting childhood cancer.

See more news and photos from this September on our blog.

Quick Links | Recommended Reading

Our founder Susan L. Weiner participated in a United Nations General Assembly meeting this week on tackling childhood cancer survival disparities in low- and middle-income countries: 

Final Opportunity to Win $100 with Our 2018 Family Needs Survey!

In partnership with the Patient Advocate Foundation, we're conducting a 5-10 minute online survey of childhood cancer families, patients and survivors to better understand healthcare barriers facing families like yours. Your input strengthens the data we take to policymakers in Washington and state capitols as we fight for improved access to quality, affordable care.

Your participation is completely voluntary, and your individual responses will be kept confidential. As a thank you for your time, you'll automatically be entered into a weekly $100 Amazon gift card drawing!

Jessica Kean