November Bulletin: Post-Election Edition

The Close of One Congress - and Preparing for Another

The election earlier this month surprised almost everyone. People across the country have since been adjusting both intellectually and emotionally as we move toward a Trump Administration and Republican control of both the House and Senate. The shock waves in Washington have been especially seismic, with policymakers recalibrating - and recalculating - how to position themselves and their agendas. 

The same is true for advocates committed to battling childhood cancer. While the goals of developing better treatments, access to care and quality survivorship remain, the outcome of the election changes many of the strategies and approaches.

One thing is certain, however: Families and patients dedicated to the fight will need to be even more focused, more engaged and more vocal. CCCA will be aggressively targeting any threats to the welfare of our kids and, as always, alerting advocates when they need to make their voices heard.

But before a new Congress and Administration take over in January, there is some urgent unfinished business in the current 'lame-duck' Congress. These are especially critical to childhood cancer advocates - and everyone will need to make their voices heard in the next couple of weeks.

Read on to find out more about these bills and what you can do to help ensure their passage in the final 13 work-days of this legislative session.


Register Now for our 12/8 Webinar: What Does the New Administration Mean for Childhood Cancer?

Don't miss this Children's Cause for Cancer Advocacy webinar, on the one month anniversary of the 2016 Election. Join us Thursday, December 8th at 5pm EST as we explore further what a Trump Administration could mean for childhood cancer, including:

  • The outlook for childhood cancer research;
  • The future of coverage for care;
  • How to become an effective advocate; and 
  • How to help us launch the CCCA Kids Action Network.

George Dahlman, CEO of Children's Cause, and Ziky Ababiya, Legislative Assistant for Rep. Chris Van Hollen will present, along with a to-be-named Republican counterpart.

Registration for this webinar is limited!

Reserve your spot today.


New York Event Exceeds Fundraising Goal: Thank you!

The Children's Cause was pleased to host another successful reception and silent auction at the James Burden Mansion in New York City earlier this month. We're so grateful to everyone who supported this year's event, which helps make our year-round advocacy work possible.

A highlight of the lovely evening was the presentation of the first Leonard M. Rosen Memorial Research Award. As pictured above, Adam Rosen presented the award to Mary McCabe, Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center. Ms. McCabe is widely recognized as a leader in cancer survivorship with the development of comprehensive programs for cancer survivors. In acknowledgement of the Award, Ms. McCabe will initiative a guest lectureship at MSK to focus on the ethics issues related to the development of new therapies for children including the issue of informed consent and specimen banks, novel clinical trial design, and how best to include children in the hoped-for benefits in targeted therapies.

We'd like to give special thanks to the Event Committee, especially event co-chairs Susan and Stephen Scherr and Lynn Bayard, and the many dedicated vendors and auction item donors for their generosity. We also thank the evening's sponsors: PhRMA, Biotechnology Innovation Organization, Fennec Pharmaceuticals, Juno Therapeutics, Novartis Oncology, and Pfizer Oncology.

Visit our blog to learn more about the Rosen Award and view photos of the beautiful evening, captured by Sarah Merians Photography.


Consider Designs that Donate in Your Holiday Shopping!

If you're searching for beautiful jewelry and accessories this holiday season, we suggest you check out Designs that Donate. They find unique items from designers around the world and then donate a percentage of your purchase total to the charity of your choice.

We're excited to be a featured charity for the month of December on Designs that Donate, and we hope you'll show your support by shopping their site! 

designsthatdonate.com


Check Your Year-End Giving Off Your List!

Yesterday was #GivingTuesday, and it marked the kick-off of our year-end giving campaign. We thank those of you who joined in the national movement to give back, after the flurry of Black Friday and Cyber Monday shopping.

Giving Tuesday may be over but the giving season has just begun. We are counting on your end-of-year generosity now more than ever, as we look ahead to the policy challenges facing children with cancer in 2017. (Bonus: If you check your year-end giving off your list today, we'll check you off our own list and spare you our December email appeals!)

Jessica Kean
September Bulletin: Awareness Month Highlights

September Awareness Month Showcases Strength of Advocate Community

This Childhood Cancer Awareness Month saw a series of events in Washington, DC that demonstrated the vitality and growing influence of the childhood cancer community.

Advocates pressed Congress on several bills that would improve treatment and care for kids with cancer - most notably the Childhood Cancer STAR Act, which we are pushing to pass before the end of the current legislative session. The White House buoyed our efforts with a proclamation and briefing on research projects by the National Cancer Institute and the President's Moonshot Initiative. [Read more in below section on the the Blue Ribbon Panel recommendations.]

The annual CureFest on September 18 brought childhood cancer organizations, including the Children's Cause, and hundreds of individual supporters to the National Mall for a show of solidarity and awareness. A full day of activities and stage performances was preceded by a candlelight vigil outside the White House the night before.

In other news, Hyundai Hope on Wheels, which has awarded $115 million to pediatric cancer research, hosted a scientific brainstorming conference and a gala for Hyundai business executives and families. Children's Cause President and Founder Susan Weiner spoke that evening about our advocacy initiatives.

To cap off a busy slate of events, Children's Cause was pleased to attend the 7th annual Childhood Cancer Summit, hosted by the Congressional Childhood Cancer Caucus. Advocates heard from NCI Director Doug Lowy about new developments in research, from Greg Simon - head of the President's Cancer Moonshot Initiative - about commitments to rapid improvements in treatment, and from patients and survivors on their challenges and victories.

September may be coming to a close but our advocacy and policy work continues year-round. Please help us send a louder message to policymakers that childhood cancer can no longer be ignored:

Donate now.


Pediatric Cancer Highlights from 'Moonshot' Report

The Children's Cause for Cancer Advocacy congratulates the National Cancer Moonshot Initiative - and specifically the Pediatric Cancer Working Group - on this month's release of ten cancer policy recommendations on research, clinical trials, data mining, prevention and patient engagement.

The panel's report, which was accepted by the National Cancer Advisory Board and the National Cancer Institute, was forward to a Moonshot Task Force headed by Vice President Biden and comprised of government representatives. The Task Force is scheduled to issue a report in October about proposed government initiatives relating to cancer. 

By design, the NCI Moonshot report focused on promising areas where progress is imminent. Of note to the Children's Cause are pediatric cancer recommendations around symptom management research, including survivorship, pediatric immunotherapy clinical trials, and oncoprotein research. Visit our blog for more details on these particular recommendations.

Children's Cause looks forward to working with the Moonshot Task Force and with Congress on the proposed recommendations with the hope and expectation that new targeted research improves the treatments for childrenwith cancer and maximizes survivors' well-being.


Landscape Report Reveals Gaps, Identifies Unique Barriers in Pediatric Cancer Research

A report on the current landscape of childhood cancer research was released this month by the Alliance for Childhood Cancer and the American Cancer Society, with guidance fromChildren's Cause. The report, "Translating Discovery into Cures for Children with Cancer," provides the latest information on trends, treatments, clinical trials, research funding and policy.

CCCA's president Susan Weiner sat on the report's 7-person Steering Committee to help develop this critical report. Highlights include: 

  • Inconsistent progress across cancer types, with a 40-50 percent 5-year survival rate for high-risk neuroblastoma, and DIPG remaining terminal.
  • Continuing high rates of late effects among childhood cancer survivors;
  • Barriers to pediatric cancer research and development of new therapies, including little incentive for companies and small patient populations for clinical trials.

You can read the one-page Executive Summary here (PDF).


In the News: Brain Tumors Now #1 Cause of Childhood Cancer Deaths

Because more children are now surviving leukemia than ever before, brain tumors have taken over as the leading cause of cancer deaths among children and adolescents. A new report from the National Center for Health Statistics paints an overall positive picture:childhood cancer death rates decreased by 20 percent from 1999 to 2014.

Today, 3 out of every 10 childhood cancer deaths are caused by brain cancer and one-quarter are from leukemia, the most common childhood cancer. These numbers are a reversal from 1999, when leukemia was the number one cancer killer among kids. In both 1999 and 2014, leukemia and brain cancer made up over half of all childhood cancer deaths.

It is important to emphasize that the survival rate for pediatric brain tumors has not increased -- nor has it significantly decreased over the years. A key takeaway from this report is the continued need for increased funding to learn more about all childhood cancers and the critical need for focused research to advance therapies for children with brain tumors.


New York Reception: November 3, 2016

You're invited to the Children's Cause for Cancer Advocacy's signature event of the year! Our annual reception and silent auction will take place at the James Burden Mansion in New York City from 7:00-9:30pm on November 3.

This year's event will feature William L. Carroll, MD, as our guest speaker. Dr. Carroll is the Director of Pediatric Hematology/Oncology at NYU Lagone's Hassenfeld Children's Center for Cancer and Blood Disorders. We will also be awarding the first annual Leonard M. Rosen Memorial Research Award at the event to Mary McCabe, RN, MA, Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering.

Tickets are now available!

If you have questions, contact Julie at jtaylor@childrenscause.org.

Jessica Kean
August Bulletin: A Preview of Childhood Cancer Awareness Month

Top Legislative Priorities Before Election Day

When Congress returns from its extended 7-week summer recess on September 6th, they will have just 17 workdays before adjourning for a pre-election recess. Some refer to this as the "lightning round of legislating," with a lot of work to be done and not much time to do it. 

 

Childhood Cancer STAR Act

The Childhood Cancer STAR Act will officially record its 250th cosponsor when the House returns from Recess -- but we are running out of time to receive a hearing and secure passage of this bipartisan, comprehensive childhood cancer legislation.

In order for the House Energy & Commerce Committee to consider this bill as one of their last priorities of this Congress, they need to hear from constituents about why this life-saving legislation is so important.

Please take a moment to fill out our Action Alert and tell Congress our kids can't afford to wait until the next Congress for action.

 

NIH Funding

Congress is tasked with deciding how much funding to provide the National Institutes of Health - and the National Cancer Institute - for 2017, as part of the larger appropriations process. As reported on our blog, a House Appropriations committee approved a spending bill earlier this summer that would increase NIH funding by $1.25 billion, while Senate appropriators would increase the NIH budget by $2 billion.

We are urging advocates to write to their Senators and Representatives and ask them to support the higher Senate number. It is imperative that the NIH and NCI continue to work for new treatments and explore the promise of immunotherapy. While we recognize that Congress faces difficult budget decisions, we also believe that Congress must further prioritize cancer research.

Take action now and tell Congress why each additional research dollar matters for children with cancer.


Take Action: Pediatric Cancer Families Feel Impact of EpiPen Price Gouging

As many kids go through cancer treatment, one of the supportive care drugs they are provided is epinephrine in an auto-injector - or epi-pen. Epinephrine is a form of adrenalin and is primarily used to treat allergic reactions to food, insects, or other substances. But it's also provided to kids in cancer treatment in case of a reaction to the drugs they're being given.
 
Over the past several yeras, the price of epi-pens has increased by some 400 percent. With the recall of a competing product, the manufacturer of the epi-pen, Mylan Pharmaceuticals, faces little market pressure and used the opportunity to escalate the price. Since the cost of providing epi-pens to parents and patients may often be out-of-pocket, these price increases are especially troubling and represent an added burden to families who are already struggling with the treatment of a devastating disease.
 
Patients from a wide variety of communities are protesting the price-gouging and calling on Congress to intervene. On behalf of the pediatric cancer community, we encourage advocates to join in this appeal by signing on to our petition urging their representatives to speak up for patients and put a lid on profits over patients. 

Sign our petition urging Congress to take action: 
https://actionsprout.io/FC5265


DC Event Line-Up: Childhood Cancer Awareness Month

Webinar on Psychosocial Impact of Childhood Cancer
September 1
The NCI is hosting an hour-long webinar on the psychosocial and social impacts of pediatric and adolescent cancers -- and how research and therapies are being created to address the unique needs of patients, siblings, parents, friends and others. Use hashtag #AskCCR to pose questions in advance on Twitter, and watch the webinar here.
 
Panel Discussion: Translating Discovery into Cures for Children with Cancer
September 8, 12:00pm-1:30pm, B-340 Rayburn House Office Building
This panel discussion, co-hosted by the Alliance for Childhood Cancer and the American Cancer Society Cancer Action Network, will examine the current state of pediatric cancer research and the unique challenges to developing new drugs to treat children with cancer. 
See invite for RSVP information.
 
CureFest 2016
September 17-18
CureFest is a festival held on the National Mall that brings thousands of childhood cancer advocates and supporters together with the general public and tourists to raise awareness about pediatric cancer. The event features informational booths, games and activities, live entertainment, and an awareness walk. For the first time this year, all events associated with CureFest are free of charge, although participants are still asked to register in advance
 
Be sure to stop by the Legislative Initiatives table at CureFest! There will be educational mini-sessions on current legislation and action steps you can take to make an impact.
 
Rally for Medical Research Hill Day
September 22
This annual event brings together nearly 300 national organizations, including the Children's Cause, to ask Congress to make funding for the National Institutes of Health (NIH) a national priority. Learn more.
 
Congressional Childhood Cancer Caucus Summit
September 23, 9-11am, Capitol Hill
Details on the 7th Annual Childhood Cancer Summit will be posted here when available.
 
Alliance Art Show and Luncheon
September 23, 11-1pm, Capitol Hill
Details will be shared when available.

 

Help us gear up for Childhood Cancer Awareness Month by strengthening our story bank. By sharing your story with us today, you empower us to have a much greater impact this September:


Recommended Reading: Quick Links

  • Children's Cause Responds to FDA's Status Report on PREA: The Food and Drug Administration released a status report in July on the Best Pharmaceuticals for Children Act (BPCA) and Pediatric Research Equity Act (PREA). Several Alliance for Childhood Cancer recommendations for improving PREA made it into the report, including an amendment that would require certain drugs developed for adult cancer indications to be evaluated for a pediatric cancer indication when there is evidence the drug affects specific molecular targets and/or mechanisms shared between adult and pediatric cancers. Read full letter. (CCCA, 8/18/16)
  • CAC2 Summit in Philadelphia: The Coalition Against Childhood Cancer held its 4th annual meeting and summit earlier this summer in Philadelphia -- its "largest and most comprehensive educational experience yet." The Children's Hospital of Philadelphia wrote up a terrific overview of the event: Childhood Cancer Advocates Find Strength in Numbers. (CHOP, August 2016)
  • Book Recommendation - Cooking for Kids with Cancer: To mark "Book Lovers' Day" earlier this month, we reviewed a new book by Chef Ryan Callahan, Cooking for Kids with Cancer. This book focuses on the food challenges facing children undergoing cancer treatment, and we include an excerpt and a sample recipe on our blog. Read more. (CCCA Blog, 8/9/16)

New York Reception: November 3

Mark your calendars for the annual New York Reception for the Children's Cause for Cancer Advocacy on November 3. This year's event will take place at the James Burden Mansion in New York City from 7:00-9:30pm.
 
Proceeds benefit CCCA's mission of advocating for less toxic treatments, federal funding for research, and better follow-up care for the unique needs of childhood cancer patients and survivors.
 
Look for email invitation to come in September. If you have questions in the meantime, contact Julie at jtaylor@childrenscause.org.
 



Jessica Kean