Big news on STAR Act: "We're gonna mark that bill up!" declares Rep. Upton

BIG NEWS came out of a rainy day in Kalamazoo, Michigan on Friday: Representative Fred Upon, Chairman of the Energy and Commerce Committee, committed to giving the Childhood Cancer STAR Act its day in committee -- with a real chance to reach a floor vote before the end of this legislative session.

Speaking at a candlelight vigil in Bronson Park put together by the group Cancer Families United, Rep. Upton told the crowd:

"This bipartisan bill that [Rep. Michael McCaul] introduced last year has more than 230 cosponsors* at this point - Republicans and Democrats - and I announced a little while ago that in fact we would move his bill to our Committee when we return [after the election]. It's called 'marking it up.' We're gonna mark that bill up and it's important that groups like this reach out to their Members of Congress all over the country, Republicans and Democrats, and say 'make sure you vote for this bill!' because if we get a big vote in Committee - like I think that we can because the homework has been done - that ought to serve as a real signal not only to the rest of the body, the rest of the Congress, but also to the Senate that this a bill that needs to get done before the year is out.

So if we can get 50 or 51 votes or so in our Committee - BINGO! - we'll get the attention of the leadership, we can get it scheduled on the Floor, and we can send a signal to the Senate that they should accept the work that we have done in the House."

*266 cosponsors as of October 4, 2016

It is important to note that with 53 members on this Committee, Rep. Upton is calling for an almost-unanimous vote to advance this bill. We've got a lot of work to do in the next month to ensure that when Congress returns after the election for their final weeks in session, this piece of legislation passes through Committee and then the House floor, so it can continue on to the Senate and the president's desk to be signed into law.

We're up for the challenge, but we can't do it without your loud voices over the coming weeks. If your Representative comes to a town near you for a campaign event, be sure to attend and ask them about the STAR Act!

And be sure to double-check the co-sponsor map on our STAR Act alert page: A red phone icon means your Member is on the Energy & Commerce Committee and not yet a co-sponsor. We really need their support!

Children's Cause would like to thank Rep. Upton for answering his constituents' call to support this comprehensive and bipartisan childhood cancer legislation!

Awareness Month Showcases Strength of Childhood Cancer Advocates

September – Childhood Cancer Awareness Month – saw a rolling series of events in Washington, D.C. that demonstrated the vitality and growing influence of the childhood cancer community.  

As advocates pressed Congress on several pieces of legislation that would improve the environment for kids with cancer – most notably the STAR Act -  the White House encouraged their efforts with a proclamation and briefing on research projects by the National Cancer Institute and the President’s Moonshot Initiative.  The latter included the release of a report of a Blue Ribbon Panel with recommendations that specifically called to “intensify research on the major drivers of childhood cancers.” 

The world of childhood cancer was also illustrated for policymakers with the release of “Translating Discovery into Cures for Children with Cancer: Childhood Cancer Research Landscape Report” by the Alliance for Childhood Cancer and the American Cancer Society, with guidance from Children’s Cause.  The report offers the latest information on trends, treatments, clinical trials, research funding and policy.

But no Awareness Month would be complete without our expressions of solidarity and commitment. The annual CureFest on September 18 by dozens of childhood cancer advocacy organizations and their supporters energized the National Mall to bring attention and purpose to the thousands of children lost to cancer and the struggles of those moving beyond it.

At the other end of the Mall, the community was also offered the continuing support of Hyundai Hope on Wheels campaign.   The car company, which devotes significant funding to pediatric cancer research, hosted a scientific brainstorming conference and a gala for advocates including Children's Cause President and Founder Susan Weiner.

The month also featured the seventh annual Childhood Cancer Summit, hosted by the Congressional Childhood Cancer Caucus, chaired by Reps. Mike McCaul (TX) and Chris Van Hollen (MD) where advocates heard from the 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 – importantly – from patients and survivors on their trials, challenges and victories.

This month demonstrated that every September the voice of the childhood cancer community gets louder, more committed and more determined; to find cures and to improve the lives of patients, their families and survivors.   More advocates will hasten the day when no child will have to face a diagnosis of cancer.  You can help bring that day.  Join the Kids Action Network and make your voice heard with policymakers for better treatments, access to care and support for survivors.

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 week's release of ten cancer policy recommendations on research, clinical trials, data mining, prevention and patient engagement.

Related: See Pediatric Cancer Working Group Report

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

By design, the NCI Moonshot report focused on promising arenas where progress is imminent. 

Of note to Children’s Cause are the following pediatric cancer recommendations:

Survivorship/Symptom management research: The report calls for the development of guidelines for routine monitoring and management of patient-reported symptoms in all care settings, throughout the cancer continuum, including survivorship.   A central tenet of the proposed National Cancer Data Ecosystem is enabling the public, including patients, survivors, and others, to directly contribute their data, or to request a health care provider do so on their behalf, for scientific research.  

Testing Immunotherapies in Children: To enhance the speed with which new Immunotherapies can be tested in children, the reports recommends the establishment of a nationwide pediatric immunotherapy clinical trials network. This network would facilitate the testing of new immunotherapy approaches to treat childhood cancer and establish a robust research pipeline to help accelerate this field of study.

Oncoproteins: Oncoproteins are critical drivers of many childhood cancers and transform developmentally restricted cells of origin.  Few drugs target oncoproteins. The panel believes that a better understanding of oncoproteins will lead to the development of novel therapeutic approaches that target these biological mechanisms.  The panel hopes this focused research will lower barriers to pediatric oncology drug development and improve the effectiveness of therapies.

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 improve the treatments for children with cancer and maximize survivors’ well being. 

Book Lovers' Day: This Year's Recommendation

August 9th is Book Lovers' Day -- one of those made-up internet holidays that are sometimes fun to indulge in! In years' past, we've shared a few of our favorite inspirational or practical cancer-related books on our blog (like this one or these), and we have a new one to tell you about this year.

Cooking for Kids with Cancer is a new book by Chef Ryan Callahan, the award-winning author of Cooking for Chemo...and After! We're so glad there's now an edition out there focused specifically on the food challenges facing children undergoing cancer treatment.

Cooking for Kids with Cancer is not a cookbook - although there are some sample recipes (we include one at the bottom of this post for you to try out!) - but instead a "parent's crash course on food and flavor during and after your child's cancer treatment."

The book begins with an exploration of flavor through all the senses - taste, smell, touch, sight, sound - through the unique lens of a child battling cancer.

An excerpt: "Finding Roundness of Flavor is the key in feeding people going through cancer treatment. Because their senses are all out of alignment, the flavor balance that may taste great to you, might taste terrible to them. When we are cooking for kids with cancer, we want to use Roundness of Flavor to realign our senses to compensate for their flavor changes. 

I found that those undergoing cancer treatment, especially chemotherapy, prefer to eat foods that are a little extra sweet and a little extra savory. Some people have even told me that all they could eat were spicy foods. And others had to avoid spicy all together. 

Roundness of Flavor helps you address your individual needs. It breaks down the puzzle into manageable pieces so that you can put the puzzle back together in a way that individually works best for your loved one going through cancer treatment. Keep a tasting journal to track what flavors your loved one enjoys and the ones that they don’t."

Chef Callahan's 242-page book is a terrific tutorial for parents looking for ways to keep their little cancer-fighter nourished and comfortable. We love anything that empowers parents with knowledge and tools to help their child through treatment - a scary time when caregivers often feel helpless.

Chef Callahan's book includes a chapter on combating common treatment-related side effects like metallic taste or nausea, chapters on kitchen basics and food safety for the novice cooks among us, plus a science-based overview of nutrition basics, practical tips for meal planning, and a ton of great recipes (a sample smoothie recipe is below) and charts on measurements, spices and more.

If you are interested in purchasing Chef Callahan's book, please consider shopping through AmazonSmile -- when you make a purchase through AmazonSmile and pick the Children's Cause for Cancer Advocacy as your charity of choice, Amazon will give us a donation!

Above: A sample smoothie recipe from Cooking for Kids with Cancer by Chef Ryan Callahan

Above: A sample smoothie recipe from Cooking for Kids with Cancer by Chef Ryan Callahan

Generating New Treatments for Kids – It’s A Team Effort

The effort to change the laws that affect pediatric research may be the most challenging and important for our community and will require continued commitment, vision, collaboration and most importantly, unity.
— Children's Cause for Cancer Advocacy

For the past 17 years, the Children’s Cause for Cancer Advocacy has served as the authoritative voice of the childhood cancer community in public policy debates in Washington, framing discussions on research funding, treatment initiatives, access to care and treatment and survivorship.

The Children’s Cause brought that focus and leadership early on to help form the Alliance for Childhood Cancer, strengthening collaboration and cooperation among the many pediatric cancer groups to achieve significant policy milestones for kids and their families.  Now with 35 organizations in its ranks, the Alliance has increased the visibility of childhood cancer issues in the Washington legislative and policy arena.

Over the years, the Children’s Cause – with unity across the community – has worked to successfully pass the Caroline Pryce Walker Conquer Childhood Cancer Act, focused attention on childhood cancer research at the National Cancer Institute, helped to accelerate survivorship programs at the NCI, pushed to address chronic shortages of drugs used to tread childhood cancer and helped enact new laws intended to evaluate new therapies for children.

The drug development laws, the Best Pharmaceutical for Children Act (BPCA) and the Pediatric Research Equity Act (PREA), continue to be priorities for the Alliance.  The two laws act in tandem as both carrot and stick to encourage new drug development for childhood diseases. BPCA provides an incentive of six months of exclusivity – or patent extension – for drugs that are approved for use in children. 

PREA - the “stick” portion of the approach - requires pharmaceutical companies who are developing a drug for adult indications to also test the drug in children.  Two exceptions to this requirement constrain their impact for children with cancer.  First, pediatric studies of a drug can only be required in the same disease (“indication”) for which it is being studied in adults.  Since children do not develop lung, breast or prostate cancer, for example, drugs under development for adult cancers do not have to be tested in kids.  A second exemption from the PREA requirement applies to any drug being developed for a “rare” disease. Rare diseases are defined in US law as those that are diagnosed in fewer than 200,000 people per year in the US.   Unfortunately, most cancers meet the definition of a rare disease.   These exceptions have resulted in PREA having virtually no effect in stimulating more treatments for childhood cancer.

Families and childhood cancer advocates anxious for new treatments have been frustrated with the inadequacy of PREA and have pressed for remedies that stimulate more childhood cancer development from industry.   With a legislative opportunity coming up in the next year through a larger must-pass bill, the Children’s Cause co-chaired a workgroup of the Alliance and Coalition Against Childhood Cancer (CAC2) that developed a series of policy recommendations to encourage more childhood cancer drug development. These recommendations include changes to the PREA statute.

Alliance membership has rallied as in the past to support this effort and unified the community in a common objective. As strong as a unified childhood cancer community might be, moving Congress on this matter will require collaboration and agreement among a broad range of stakeholders, including a variety of patient groups (the laws cover more than just cancer), professional medical associations, research institutions, federal agencies and - most importantly - the biopharmaceutical industry.

In anticipation of a new Congress and legislation affecting the FDA, the Children’s Cause has begun a broad consensus-building process to solicit additional recommendations and suggestions by stakeholders that will create a bold, effective framework for the creation of new drugs for kids with cancer.

The Children’s Cause, along with the Alliance, has been committed to successfully spearheading policy initiatives that have advanced an agenda for childhood cancer that advances therapies and improves care.  The effort to change the laws that affect pediatric research, however, may be the most challenging and important for our community and will require continued commitment, vision, collaboration and most importantly, unity. 

Together, we look forward to improving the lives of children with cancer.

NIH Poised to Receive Funding Increase

It is imperative that the NIH and the NCI continue to work for new treatments and, ultimately, a cure for childhood cancer. While we recognize that Congress faces difficult budget decisions, we also believe that Congress must further prioritize cancer research. Adequate funding is needed to make progress to treat children cancer patients and support their families.
— Children's Cause for Cancer Advocacy

The House Appropriations Subcommittee for Labor, Health and Human Services, and Education has approved a spending bill for fiscal year FY 2017 that includes an increase of $1.25 billion in NIH funding (to a level of $33.3 billion).  That total includes $5.338 billion for the National Cancer Institute, or $154 million above the FY 2016 level.  These increases are smaller than those approved by the Senate Appropriations Committee.  The full House Appropriations Committee is scheduled to consider the bill on Wednesday, July 13th.

As part of the Alliance for Childhood Cancer, the Children’s Cause supported funding the NIH at $34.5 billion and $5.9 billion for the National Cancer Institute (NCI).  In addition, as part of the Alliance for Childhood Cancer, the Children’s Cause sought new Committee report language around exploring new interventions such as immunotherapy; the report encouraged the NCI to further explore new interventions as a promising new treatment strategy for children with cancer.

The spending bill under review by the House Appropriations Committee includes the following specifics of interest to the childhood cancer community: 

It is imperative that the NIH and the NCI continue to work for new treatments and, ultimately, a cure for childhood cancer.  While we recognize that Congress faces difficult budget decisions, we also believe that Congress must further prioritize cancer research.  Adequate funding is needed to make progress to treat children cancer patients and support their families. 

The Children’s Cause will continue to work for higher funding levels for the NIH and the NCI as the appropriation’s process continues this year. 

Now Accepting Nominations for Rosen Research Award

The Children’s Cause for Cancer Advocacy is pleased to announce the Leonard M. Rosen Memorial Research Award of $10,000, to be granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy. 

Relevant work should be related to advancing treatment and care for these children, adolescents and young adults and their families.  Examples of areas of work include outcomes research, healthcare quality, delivery and cost, economics of drug development, improved access to therapeutic agents. The award recognizes the importance of the unique challenges associated with the care and treatment of children with cancer that may not be associated with the treatment and care for adults with cancer.

Individuals who are engaged in projects in the broad fields of childhood cancer policy and/or advocacy are encouraged to apply or to be nominated by colleagues or mentors.

Applicants are asked to submit a detailed Curriculum Vitae, including publications, a two-page statement of how the Rosen award will be used to advance policy and advocacy, and two references. Detailed research plans are not required.

The deadline for submission of applications is August 1, 2016. The inaugural Rosen Award will be made at the Children’s Cause annual gathering in New York City in November 2016. 

Apply here.

Way to #StepUp, Stacie!

This was the chance I’d been waiting for, the chance to advocate for a better quality of life.
— Stacie Ritter, mom of twin survivors

As a member of the Alliance for Childhood Cancer, the Children's Cause was proud to help bring to life the 5th Annual Childhood Cancer Action Day on May 17th. Two hundred advocates from around the country attended the event, spending a full day in advocacy training before taking to the Hill in pre-arranged meetings with their Congressmen.

This year's event came at an especially important time, as the Childhood Cancer STAR Act is nearing the critical Committee stage of the legislative process.

The advocates' efforts paid off big-time! The very next day, the STAR Act reached a huge milestone: Over HALF of the House of Representatives had officially signed on as co-sponsors of this life-saving legislation!

One advocate in attendance shared her thoughts with us about the experience, and we want to share them with you.

Stacie Ritter from Pennsylvania is a mom of four, including twin girls who were diagnosed with cancer as toddlers. Stacie attended Action Day with her son Ethan.

The twin survivors were unable to attend this year for the very best reason:  they're finishing up their senior year in high school!

[Read the Twins' Story →]

Stacie and Ethan were proud to advocate on their behalf. Stacie was moved by remarks made by the Childhood Cancer Caucus chairs, Reps. Michael McCaul and Chris VanHollen.

“Representative McCaul gave an eloquent speech stating that he couldn’t think of a more appropriate place to hold a reception for childhood cancer than the Homeland Security Committee room, because childhood cancer is the number one threat to our children’s security.”
— Stacie
Ethan and Stacie with Rep. Mike Kelly (PA-3)

Ethan and Stacie with Rep. Mike Kelly (PA-3)

Stacie and Ethan attended three meetings with Congressional offices and then spent some time dropping off informational materials to other Hill offices. Stacie told every Pennsylvania office: "Between the University of Pennsylvania, Penn State Hershey, and University of Pittsburgh research hospitals, Pennsylvania can be the state that reaches the Moonshot and finds the cure for cancer!"

Stacie, a vocal and engaged advocate around local issues back home, last attended a lobbying event in Washington in 2009. Back then, advocating for the Caroline Pryce Walker Conquer Childhood Cancer Act, Stacie found herself out-of-place, surrounded by parents whose children had died battling cancer. She wrote to us at the time that it was "a very traumatic day, considering I brought my twin daughters along thinking it would be educational and empowering for them, knowing they can and do make a difference! Instead, they heard story after story from parents whose children had relapsed and died."

"My heart broke for those parents, and I was reminded how fortunate I am to still have my girls with me," Stacie said, reflecting on her experience from seven years ago. "But I left that day feeling that I'd been unable to make a difference regarding survivorship issues. At the time, under those circumstances, I didn't feel like I had a right to 'complain' about late effects issues in a room full of parents who would have given anything to have their child back."

"This year was different," Stacie told us, relieved. "Out of seven families from Pennsylvania, five were telling stories about their children survivingThis was the chance I'd been waiting for, the chance to advocate for a better quality of life.

"Could we have made strides in the last 7 years? Or was it just coincidental?" Stacie wonders. "Maybe it was a little of both. What I do know is this:  I now have renewed hope that in another 7 years, the table will be full of survivors -- all coming to DC to say thanks for supporting legislation that made this possible!"

Stacie, left, and Ethan, front, with the rest of the Pennsylvania delegation at Action Day 2016

Stacie, left, and Ethan, front, with the rest of the Pennsylvania delegation at Action Day 2016

#StepUp for the #STARAct

This is a critical week in our community’s mission to make childhood cancer a national priority. Over 200 advocates are in Washington preparing to storm the halls of Congress and they need support from all of us at home backing up their message.

Please join this coordinated community campaign by asking Congress to #StepUp for the #STARAct.

This week’s efforts have real potential to advance the Childhood Cancer STAR Act to the Energy & Commerce Committee for its consideration. With a strong and unified voice, we aim to get this legislation into committee, passed, and onto the House floor.

Please support our advocates in Washington and children with cancer around the country by taking action at home. Here’s how:

     Check the map, then write your Rep: Check the updated map of STAR Act cosponsors.

     If your Member is already signed on, please tell them ‘thanks!’

     If your Member is NOT yet signed on, use the Write Congress widget under the map to ask them to #StepUp and co-sponsor!

     Use the hashtags #StepUp and #STARAct so we can follow along. Visit the image bank to find messages to share.

     Tweet your members of Congress using the Twitter-based action platform SoundOff.

     Get visual: Change your Facebook and Twitter profile photos to the #StepUp image.

     Help us go viral: Share #StepUp posts with your friends and ask them to share with their friends!

Please follow our Facebook and Twitter pages for new posts to share with your friends and family about why we #StepUp for the #STARAct.

For sample tweets and more information, visit the May Campaign Toolkit on the StepUp website.

Children's Cause for Cancer Advocacy is proud to be part of this joint effort of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer. Please join us as we #StepUp to make our united voices heard on behalf of children with cancer

Guest Post: Why DIPG Needs an Awareness Week

About the Author: Janet Demeter is the founder and CEO of Jack's Angels Foundation based in Santa Clarita, California. Janet's three-year-old son Jack was diagnosed with DIPG in October 2011 and passed away in July 2012. Jack's legacy lives on through Janet's tireless work as a vocal advocate in the fight against this devastating disease. Janet recently secured the introduction of a House Resolution (H.Res.586) that would designate the fourth week in May as DIPG Awareness Week.

By calling attention to one type of childhood cancer, we aim to elevate the profile of all childhood cancers.
— Janet Demeter

Pediatric cancer is the leading cause of disease-related death in children in the United States, and brain tumors, including DIPG, are the deadliest of all. Diffuse intrinsic pontine glioma - or as I call it "Cancer's Death Row for Children" - has seen no change in prognosis since Neil Armstrong's daughter died of it in 1962. 

The experience we had with our son Jack was so horrific, not just in the terminal diagnosis but for the obvious lack of research activity for these children. Families regularly hear that there is nothing to save their child, because the numbers aren't great enough for investors. DIPG mostly affects young children between 5 and 10 years old, with 200-400 diagnosed every year in the U.S. These kids remain fully aware of their demise until respiration is affected and death ensues.

How many children have to die in such an excruciating way before the medical research system deems their lives worth saving?

DIPG - with its staggeringly grim odds - is nothing new. But with growing awareness through social media, parents are learning that DIPG is not so rare as excuses attempt to justify. We are banding together as advocates and refusing to feel powerless any longer. 

H.Res.586 - Chad and Jack's DIPG Resolution (named for my son Jack and also Chad Carr of Ann Arbor, MI) - designates the 4th week of May as National DIPG Awareness Week in honor of the thousands of little heroes who have bravely faced death without fanfare throughout the decades and for those who are currently fighting with courage on Cancer's Death Row. H.Res.586 was introduced in January by Congressman Steve Knight (CA-25) and calls for elevated consideration for low-survival-rate cancers and years-of-life-lost in the research grant process with the NCI.

H.Res.586 is the first legislation to directly recognize DIPG, but our goal is to raise awareness for all the hundreds of types and sub-types of pediatric cancer. By calling attention to one type of childhood cancer, we aim to elevate the profile of all childhood cancers. Childhood cancer as a whole is marginalized and neglected by the medical research system, and DIPG serves as a particularly devastating example. By shining a light on DIPG, we hope to brighten the path for all kids with cancer -- kids who deserve more awareness and much more support.

Our goal is to pass this legislation in time to coincide with this May's Brain Tumor Awareness Month. As a non-controversial resolution, it only requires passage by one chamber of Congress.

Here are a few ways you can help us advance this bill:

  • WRITE CONGRESS:  The Children's Cause has created a simple action alert form for you to write to your Representative about this bill. Please take a moment to send this important and urgent alert, and then share it with your friends and family.
  • VIRTUAL ACTION DAY, APRIL 20: Join us on Wednesday, April 20th for a virtual Action Day. Learn more, or join the Facebook Event.
  • RUN FOR H.RES.586: This 200-mile run taking place in Southern California April 20-24 will feature ultra-distance runners showing their support for this cause. Learn more, and listen in on April 21 to Childhood Cancer Talk Radio to hear from some of the runner/activists involved! 
  • RELAY FOR JACK!: The main fundraiser of the year for Jack's Angels is taking place May 28th in Agua Dulce. This race will race funds to support a specific research project for DIPG at the Children's Cancer Therapy Development Institute. Learn more about this run and this project, called "Jack's 12 Pebbles."

- Janet Demeter, CEO of Jack's Angels Foundation