March Bulletin: Mobilizing Childhood Cancer Advocates

KIDS ACTION NETWORK: NOW ACCEPTING MEMBERS!

We are excited to have a new grassroots advocacy program in development called the Kids Action Network (KAN). As we prepare to launch this new program, we invite you to become a founding member.  Members of KAN will receive tools and training to become engaged and effective advocates in Washington, in local communities, and online.

To promote and recruit this new program, we've spent some time this month talking about the power of advocates working together to find safe, effective, affordable treatments and cures for our kids:

CURE Magazine profiled our work through the lens of one family advocating on behalf of their daughter, a three-year-old survivor of a rare and typically fatal brain tumor: Children's Cause Gives Families a Voice in Pediatric Cancer Policy Debates.

George Dahlman, Children's Cause CEO, appeared on Childhood Cancer Talk Radio this month to discuss current policy issues in Washington and the power of collaboration in the childhood cancer community. A short clip is at right, and the full hour-long podcast is available here.

We have exciting plans in store for the KAN program and we are grateful for these opportunities to invite more passionate people to join our growing ranks of childhood cancer champions. As this program fully takes shape over the coming weeks and months, we look forward to keeping you posted on its first activities and achievements! 

Become an Advocate: Sign up now to become a founding member of the Kids Action Network!


CHILDHOOD CANCER STAR ACT: TURNING THE MAP GOLD

The Childhood Cancer Survivorship, Treatment, Access & Research (STAR) Act continues to gain bipartisan support in Congress with nearly 200 House and Senate co-sponsors, but we need even more in order to advance this bill to the Committee phase of the legislative process.

We've made it easier for you to engage around this bill with an interactive map and write-to-Congress tools all on the same page. If you see a red telephone icon in your district, then your Congressman sits on the critical Energy and Commerce Committee and needs to hear from you! We were glad to help bring this new tool to life and we hope it helps all of you engage around this bill.

Related: The Huffington Post Parents Blog asked their readers to think about the terrifying reality of childhood cancer in a piece titled "Childhood Cancer - How You Can Help." The post linked to our action alert, bringing brand-new supporters to our cause and new voices to Congressional offices. Thank you, Huffington Post!

TAKE ACTION:  Check the map, then write your Rep!


NIH AND NCI FUNDING: ALLIANCE WEIGHS IN

Through the Alliance for Childhood Cancer, we submitted comments this month to Appropriations Committee leadership on Fiscal Year 2017 funding levels and priorities. In this letter, we call for $34.5 billion for the National Institutes of Health (NIH) and $5.9 billion for the National Cancer Institute (NCI) in FY2017.

We also call for childhood cancer to become a greater priority within Congress and the NIH. Toward that aim, we included specific requests for report language around the Pediatric-MATCH Trial, pediatric immunotherapy advances, and more.

Read the full letter here.


REGISTER NOW FOR CHILDHOOD CANCER ACTION DAYS

There's still time to register for the 5th Annual Childhood Cancer Action Days in Washington on May 16 & 17. This two-day Alliance for Childhood Cancer event brings our community together to advocate for important childhood cancer issues currently before Congress. Register here.

Issues and Advocacy Training will take place Monday, May 16th at the Holiday Inn on Capitol Hill, followed by pre-arranged meetings with Members of Congress and their staff on Tuesday, May 17th. A block of rooms has been secured at the training location with a group rate deadline of April 15th.

Visit the Alliance for Childhood Cancer website for more information on registration, scholarships (still available!), and hotel reservations.


RESEARCH ROUND-UP

  • FERTILITY: Male survivors of childhood cancer are three times more likely to suffer infertility as a late effect of their treatment compared to female survivors. The new research, which examined the impact of 14 commonly used chemotherapy agents, found that 50 percent of male survivors would later become fathers compared to 80 percent for their siblings. The study's authors reinforced that boys diagnosed post-puberty should bank their sperm. Female survivors studied were significantly less likely to suffer infertility problems, but problems with fertility accelerated after age 30. (The Lancet Oncology)

RelatedCincinnati Children's is offering a Live Q&A on Fertility Preservation for children with cancer on April 20. Learn more and register.

  • HEART HEALTH: A two-decade clinical trial has proven the effectiveness of the cardioprotective agent dexrazoxane when administered following doxorubicin therapy (associated with toxic cardiac effects) for children with certain blood cancers. The study followed 600 patients and found that children who received dexrazoxane during their treatment had normal hearts, while many of those who did not receive dexrazoxane had significant cardiac late effects. (Journal of Clinical Oncology)
  • MEDULLOBLASTOMA: Early research in mice has identified a new and less toxic combination therapy to potentially treat the most aggressive form of medulloblastoma (Group 3 tumors). Patients with Group 3 medulloblastoma have just a 40 percent survival rate. Researchers hope to quickly advance this novel drug combination to a clinical trial (Cancer Cell)

ADVANCING HOPE ACT PASSES OUT OF SENATE HELP COMMITTEE

The Advancing Hope Act, a provision to reauthorize a pediatric priority review voucher program, passed out of the Senate's Health, Education, Labor & Pensions Committee this month by a vote of 18-2. This legislation is part of the broader Innovation for Healthier Americans Act, which is the Senate response to the House's 21st Century Cures bill (H.R.6, passed in July 2015).

The Senate Committee voted to extend the Advancing Hope Act program by ten years, which would give the program a 2022 sunset, with a 2027 extension for drugs and biologics that receive a rare pediatric disease designation by 2022.


SURVIVOR SPOTLIGHT: MEET AIDEN

In recognition of March as National Kidney Month, we highlighted a young survivor of Wilms' tumor to help spread awareness that children get kidney cancer, too. This March also marked three years since Aiden, now 6, was diagnosed with the disease.

"Over the course of the last 3 years, I have met many child patients, or warriors, and their families. I count them among some of the bravest people I know. Many of their stories don't end happily. We need to do more. More for these kids, and their families," his mom writes. "I can tell you that there is not a day that goes by that I don't feel a flash of terror at the thought of his cancer returning, even though the statistics say it won't. I have seen too many beautiful children succumb to these disease and become the wrong statistc."

Thank you for reading and sharing.

Have a story of your own? We want to hear from you.


HELP US UPDATE OUR RESOURCES

As part of a recent website relaunch, we are conducting a full review and update of our online resources. We want to hear from you: What organizations, publications, links or other resources would you recommend to families navigating childhood cancer? 

We're looking for resources that span the spectrum of care, from diagnosis and clinical trials to palliative care, transitions of care, survivorship and more. Thank you for helping us provide information that is current, comprehensive, and useful to families!

Leave your suggestions here, or email us at jkean@childrenscause.org.