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