The Close of One Congress - And Preparing for Another

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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, engaged and 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.  (All pending legislation dies at the end of two-year Congress and has to be start over.)  These are especially critical to childhood cancer advocates – and everyone will need to make their voices heard in the next couple weeks.   

Since last year the childhood cancer community has been unified in its support of the Survivorship, Treatment, Access and Research (STAR) Act, generating some 270 cosponsors and most of the all-important House Energy & Commerce Committee.  CCCA was involved in the initial drafting of the bill and strongly supports its passage. If the House can pass the bill, Senators Reed (D-RI) and Capito (R-WV) have been laying the groundwork to move it quickly through the full Senate.   The childhood cancer community is now planning a social media day to get the bill across the goal line.  Stay tuned to fire up your Facebook and Twitter networks!

The other high-profile item left for this Congress is legislation known as 21st Century Cures.  In debate over the past year, the bill is intended to help bring drugs to market more quickly by making reforms to the FDA, increasing patient involvement in the drug approval process, and the promise of more funding.  Those dollars would include $4.8 billion for the National Institutes of Health, $1.8 billion for the Cancer Moonshot to speed cancer research, and $1.5 billion for the Precision Medicine Initiative – all of which would support pediatric cancer research and clinical trials.

That funding, however, is tied up with the largest item on Congress’ ‘to-do’ list – the federal budget for fiscal year 2017.   Congress never completed work on a full year budget for the year, that began on October 1.  Instead, they passed a temporary stop-gap measure that expires on December 10 – simply continuing current funding levels.   Instead of passing a budget for the balance of the year, the new Administration has requested another temporary measure – known as a ‘continuing resolution’ - that would run until March 31, 2017 while the new Congress can decide on its priorities.   This is not the best scenario for federal agencies like NIH and the FDA.   Agencies, like companies, need some predictability to project future program needs; especially when it’s for multi-year research grants.  

That brings us to preparation for the coming year and the environment for childhood cancer policy.  The new Administration and Congress bring with them a great deal of uncertainty, and pediatric cancer advocates will need to be vigilant in defending treatments for our kids. Funding for pediatric cancer research is one issue, as is the Administration’s vow to repeal and replace the Affordable Care Act (ACA), as well as the block-grant funding of Medicaid, which could leave many childhood cancer families vulnerable to higher out-of-pocket costs. 

CCCA is building its 2017 agenda on making sure that policies promote the development of better treatments, provide access for patients and improve the lives of survivors.  More importantly it’s in making sure your voice is heard in delivering on that agenda.  Now more than ever, families and patients will need to get involved.  We want to help you do that.  Join the Kid’s Action Network and be kept informed of new developments and make your voice heard.

And watch this space as the new Washington unfolds for childhood cancer.  

It promises to be a wild ride.

This #GivingTuesday, let's leave our kids a legacy.

Children with cancer are counting on Congress to approve two critical pieces of legislation in the final 13 work-days of this legislative session. 

We're so close to securing passage of the Childhood Cancer STAR Act and increased funding for the National Cancer Institutes -- but we need your help in the home stretch. Your donation today will help make our voice stronger and louder: We've set a #GivingTuesday fundraising goal of $2,000, which will enable us to reach an additional 25,000 advocates in these final days of legislative work.

Here's another reason to give today: When you click the button below to give, GoodWorld will match your first $10! Plus, GoodWorld is waiving their fees today so we’ll get 100% of your donation -- so it’s truly the best time to give.

Will you join us as we double down in our fight to pass these life-saving bills? With your donation today - on this national day of giving back - you can give the gift of hope to the thousands of children waging the battle against cancer this holiday season -- and the 16,000 more who will be diagnosed next year. Many of those children will face long, difficult struggles. Together, we can ease their burden and improve their chance of living a long and healthy life.

If you'd prefer not to sign up with GoodWorld, you can also give through our regular secure donation page by clicking the button below. Thank you for making our advocacy work possible -- especially at this critical time!

CCCA Presents First Annual Rosen Research Award at NYC Reception

Rosen Award recipient Mary McCabe with Adam Rosen, son of Leonard Rosen

Rosen Award recipient Mary McCabe with Adam Rosen, son of Leonard Rosen

The Children's Cause for Cancer Advocacy was pleased to present the first Leonard M. Rosen Memorial Research Award to Mary McCabe earlier this month at our annual cocktail reception in New York City. Ms. McCabe is the Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center.

The Award honors CCCA chairman and founding member Leonard Rosen and his many years of service on the board of directors. Leonard was the proud grandfather of a child treated successfully for rhabdomyosarcoma. He was a brilliant and astute advocate who worked to advance research and regulations that could improve the effectiveness of childhood cancer therapies. 

In tribute to his legacy, the Award is granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy, recognizing the importance and unique challenges associated with the care and treatment of children with cancer.

Mary McCabe is widely recognized as a leader in cancer survivorship with the development of comprehensive programs for cancer survivors, which includes follow-up care, research, and education and training. An oncology nurse, she previously served as Director of Education and Special Initiatives at the National Cancer Institute and chairs Memorial Sloan Kettering's Ethics Committee.

In acknowledgment 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. 

"The CCCA Board is particularly gratified to present Mary with this, the first annual Rosen Award, in recognition of her long-standing contributions, passion and dedication to the needs of pediatric cancer patients, families and survivors," said Susan Weiner, Chair and Founder of CCCA. "We feel confident that her stature and achievements will set an exemplary precedent for this Award in the years to come."

In addition to Ms. McCabe's acceptance of the Award, attendees also heard from Dr. William L. Carroll of the Hassenfeld Children's Center for Cancer and Blood Disorders at NYU Lagone Medical Center, on the future of childhood cancer treatment.

We are so grateful to everyone who supported this year's event, which helps make our year-round advocacy work possible. 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.

Finally, we thank Sarah Merians Photography & Video Company for capturing beautiful images of the event. Here are a few of our favorites: 

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.