March Bulletin
 
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President's Budget Proposes Cuts to NIH

Childhood cancer advocates were encouraged when President Trump announced a childhood cancer research initiative at the State of the Union address, proposed at some $500 million over ten years – or $50 million a year.

But the promise of that extra funding and any new initiatives was thrown into doubt this month with the release of the Administration’s budget proposal. It recommended that the National Cancer Institute (NCI) be cut by 17% or $897 million; theoretically dwarfing any increase in childhood cancer funding.

We break this down in more detail on our blog but here's what you need to know: Even in the most harmonious environment, the President's budget is merely a suggestion. In this case it’s more like ‘dead-on-arrival.’ Over the coming months, Congress will decide what is available for each agency and program in a deliberate process, with input from stakeholders, including us.

It will be critical as childhood cancer advocates, patients, families and supporters, that we appeal to our representatives — and we've made it easy for you to do just that with the top action alert on this page.

It’s imperative that our community stand shoulder-to-shoulder with other cancer groups to ensure that total NCI funding is increased. A rising tide lifts all boats. At the same time, our community needs to stress the urgent need that the promise of the STAR Act be fulfilled and that the President’s promise of childhood cancer is met – so that no child is left behind. Take action now.


College Scholars Program: Last Chance to Apply!

The deadline to apply for our College Scholars Program is just two days away -- March 31st at midnight EST. We're awarding two survivors with a $2,000 academic scholarship, along with the chance to gain valuable cancer advocacy experience.

Our College Scholars Program includes a requirement to complete 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. Award recipients will be selected and notified by April 15th.


Webinar Recording Now Available

We held a webinar this week to provide an update on progress since last fall's externally-led, FDA-approved Patient Focused Drug Development (PFDD) meeting on chemo-induced hearing loss. If you weren't able to join us, the webinar recording is now available: www.childrenscause.org/webinars

We are working to finalize the formal "Voice of the Patient" report that will go to the FDA. If you want to be among the first to receive the final version of that report once it's ready, sign up on the project website: www.childhoodcancerpfdd.org.


Update Your Contact Information

We are in the process of updating our advocate and donor contact information. Can you help? Please take a few minutes to make sure we have your current phone number, email, and mailing address. If you are not sure we have your correct address information, please provide your information by completing the form at this link.

We also want to learn more about you so we can deliver the information you find most important. Are you a parent of a childhood cancer survivor or current patient? Are you most interested in new treatments, survivorship, or advocacy -- maybe all three or something else altogether? Please share that with us as well: www.childrenscause.org/update


Reframing Medicaid : An ACS Initiative

If you have Medicaid or are in the health insurance gap, we want to hear from you! We're supporting an American Cancer Society initiative to collect stories that put a human face to Medicaid, to combat common misconceptions about Medicaid and the families who rely on it to keep their children healthy. If you're willing to open up about your Medicaid story - and focus attention on this issue - either send us a note at info@childrenscause.org so we can touch base or fill out this form at the ACS website.


Results from our Two Year Patient Needs Survey

In both 2017 and 2018, we conducted an online survey in partnership with the Patient Advocate Foundation. We heard from nearly 450 caregivers and survivors, and now we're sharing a few top findings related to survivorship, financial hardship, and coverage challenges.

Key takeaways:

  • 60% of childhood cancer families we surveyed either don't have a written survivorship care plan or are unsure if they do. Follow-up care plans are a critical tool for transitioning care to adult providers and managing long-term side effects.

  • Among parent/caregiver respondents in both 2017 and 2018, 6-in-10 reported experiencing a financial hardship over the past 12 months due to the cost of their child's medical care. Of those who have experienced a recent hardship in both years’ surveys, approximately one-third categorized that hardship as extremely severe, unable to manage.

Among caregivers surveyed in both 2017 and 2018, one-third reported insurance denials for treatment. The impact of those denials ranged from forcing caregivers to spend time navigating their insurance plan to requiring out-of-pocket expenses or loans and interrupting or changing the course of their child’s treatment.

Read more here, including personal testimonials.


Save the Date for Jazz in June

We invite all of you in DC, Maryland and Virginia to join us on Monday, June 17th at the Hamilton in Washington, DC from 6pm - 8pm. It promises to be a terrific evening of music, food, fun and friends. And you don't want to miss our silent auction this year -- especially foodies, sports fans and adventurers!

Tickets are now available, at this link. Get yours today!



2018 Annual Report Now Available

We're proud to announce the release of our 2018 annual report, an electronic booklet filled with our most notable achievements and accomplishments from the 2018 calendar year, plus a financial reporting of our revenue and expenses.

Please visit www.childrenscause.org/governance and click on the cover image to flip through this document to see how your financial support in 2018 translated into real progress on behalf of children with cancer and the nation's 500,000 childhood cancer survivors.

 
Jessica Kean
February Bulletin: State Advocacy Opportunities and more
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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:
https://www.childrenscause.org/actioncenter/

Jessica Kean
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