URGENT: Stand with us to defend children with cancer.

We know this is a bold statement but we aren't exaggerating: recent policy proposals out of Washington pose a very real threat to the lives of children with cancer. We need both advocates and donors to step up -- now more than ever before.

Decade upon decade, year upon year, the story of childhood cancer has been one of progress. By investing in medical research, scientists have discovered treatments and cures that previous generations could never have imagined. That progress has accelerated in recent years, spurred by a new era of precision medicine and genomic advances. But as science sits on the cusp of incredible new breakthroughs, we face this terrible possibility:  that we may, by political choice, take real steps backwards. 

Spiking our grave concern are two big policy proposals that you've surely heard of by now: the American Health Care Act and the President's budget blueprint.

Here's where we stand, and how you can help:

The American Health Care Act (AHCA) 

Our position: As a whole, the bill will shift health insurance costs to low and middle-income patients and families, significantly reduce the standards for quality insurance, curtail the Medicaid expansion and - over time - substantially reduce overall Medicaid funding. The AHCA would remove critical financial protections for families facing the crisis of a childhood cancer diagnosis, and that poses significant risks to the access, treatment, and care of children with cancer and survivors. Read our full statement to learn more.

Take action: If you share our concerns, we urge you to join us in reaching out to your Members of Congress about this bill. Write Congress here, and make a donation to help us speak louder on this issue.

President Trump's Budget Blueprint

Our position: The White House’s recently released budget includes deep cuts to research agencies, eliminating $6 billion (20 percent) of the National Institutes of Health (NIH) budget, and $1 billion in cuts to the National Cancer Institute. These cuts would have a devastating impact on childhood cancer research, which is almost entirely dependent on federal funding. 

Take action: Cancer research has always had bipartisan support. Please tell Congress we need them to stand up for the NCI and its life-saving medical research. Write Congress here, and make a donation to amplify our voice on Capitol Hill.

Like every battle for our children's lives, we won't back down without a fight. Can you chip in to strengthen our cause?

Please take action today with your words and with your dollars.

The American Health Care Act: What would it mean for children with cancer?

We've been closely analyzing the components of the recently released GOP healthcare plan, the American Health Care Act (AHCA), including speaking with experts and evaluating the input from the larger medical and patient advocate community. 

In any healthcare debate, the Children's Cause evaluates proposals through the lens of children and families. Our healthcare goals align with our core mission: to increase access to more effective therapies; to expand resources for childhood cancer research, and to address the needs and challenges of childhood cancer survivors. 

Our Statement on the AHCA:

The American Health Care Act (AHCA), as passed by two House Committees (as of 3.13.17), retains two critical childhood cancer protections -- prohibiting insurers from charging more based on health status and prohibiting pre-existing condition exclusions. However, the bill as a whole will shift health insurance costs to low and middle-income patients and families, significantly reduce the standards for quality insurance, curtail the Medicaid expansion and - over time - substantially reduce overall Medicaid funding.

Cancer is the leading disease-related cause of death for children aged 1- 19, with almost 15,000 children diagnosed each year.   By 2020, there will be at least 500,000 childhood cancer survivors in the U.S.  with serious long-term effects of their cancer diagnosis and treatment.  Significantly, some 30 percent of childhood cancer patients are covered by Medicaid at the time of diagnosis. 

The AHCA would change the income-based subsidy to a flat tax credit and impose late enrollment penalties for individuals who do not stay continuously covered. This is a significant issue for young pediatric cancer survivors.  It would also change the structure of the more flexible Medicaid program by converting federal Medicaid funding to a per capita allotment. It will freeze the enhanced federal match for Medicaid expansion currently used by many states, thereby making improvements for new treatment options potentially inaccessible.  

The AHCA would remove critical financial protections for families facing the crisis of a childhood cancer diagnosis. Cancer survivors who receive tax credits will also lose financial protections.   The AHCA proposal would alter current federal guarantees of Medicaid benefits and eligibility, threatening access to care for children with cancer. Maintaining current Medicaid coverage and adequately funding state programs are critical to providing children with cancer and childhood cancer survivors life saving and enhancing treatments.  The Children’s Cause believes the American Health Care Act poses significant risks to the access, treatment and care of children with cancer and survivors.

If you share our concerns, we urge you to join us in reaching out to your Members of Congress about this bill. Visit our healthcare action page to send a letter using our form template:

AHCA Statements & Perspectives from Twitter:

A Bill To Generate More Treatments for Childhood Cancer!

The small population of children with cancer provides little market incentive for the biopharmaceutical industry to develop new pediatric oncology drugs. Children with cancer are currently treated with drugs that were developed several decades ago for adults, and research documents that they can be very damaging to their physical and intellectual development. Childhood cancer remains the leading cause of disease-related death in our children, and new and better therapies are sorely needed for children battling cancer.

Responding to this problem, Congress passed the Best Pharmaceuticals for Children Act (BPCA) in 2002 and the Pediatric Research Equity Act (PREA) in 2003 which provide critically important information on the safe and effective use of medications in the pediatric population, advancing the health of children.  While BPCA and PREA have yielded important new safety and labeling information for other children’s diseases, the laws have had a very modest impact on childhood cancer.

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 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.

That may be about to change, however.  Legislation titled the Research to Accelerate Cures and Equity for Children (RACE) Act has just been introduced by Senators Bennet (D-CO) and Rubio (R-FL) and by Reps. McCaul (R-TX) and Speier (C-CA) that would eliminate those exemptions and improve opportunities for more studies in childhood cancer.  Furthermore, the legislation would determine whether childhood cancer studies are warranted based on the “method of action” or affected biomarkers, rather than the site of the cancer; which is now the basis of most cancer drug development.     

With a legislative opportunity coming up in the next year through a larger ‘must pass’ bill, the Children’s Cause is encouraging childhood cancer advocates to urge their senators and representatives to cosponsor this legislation. Click the button below to use our form and send a message to your Members of Congress asking for their support!

Quick Healthcare 'Fixes' Put Children with Cancer at Risk

Liam, childhood cancer survivor

Liam, childhood cancer survivor

Liam was diagnosed with leukemia in September 2015, just weeks before his second birthday. Now an energetic three-year-old, Liam is still receiving treatment and says he wants to be an oncologist when he grows up so he can help other kids like him get better.

A childhood cancer diagnosis is always devastating for a family and requires an adjustment to a whole new paradigm. Liam’s dad was only given a few days off of work to be with his family after the diagnosis, and Liam’s mom Katie had to quit her job to meet the demands of a grueling treatment regimen for Liam while also caring for his little brother. Liam’s family is grateful that he’s doing well and responding to treatment, but they’re scared about what changes to the Affordable Care Act could mean for them and for Liam.

“Without some of the protections in the ACA, we fear our lives will crumble. Our middle-class family risks being thrown into a cycle of poverty that we can’t ever climb out of,” Katie wrote recently in a letter to President Trump. “Please fight for these kids and others who rely on some of the vital parts of the ACA. Our families have worked and continue to work paying into a government we trust will step up and care for its sick and poor.”

We’ve heard story after story about families like Liam’s, facing significant financial hardships after a childhood cancer diagnosis and getting by only because of the protections afforded by the ACA. Before 2014, health insurance plans routinely denied coverage to individuals with a pre-existing health conditions. Individuals who were diagnosed with a serious illness often found their coverage rescinded. Infants with acute care needs – like a cancer diagnosis – could find themselves maxed out of their “lifetime” caps for coverage before preschool. Young adult survivors would skip their follow-up exams once they aged out of their parents’ coverage, risking long-term complications and secondary cancers.

We’ve heard that Republicans in Washington are planning to make “repeal and replace” a priority when they return from their February recess, on February 27th. Before heading back to their home districts, Republican leaders released a 19-page policy brief that provided a long-awaited outline of their healthcare reform strategy, which involves an age-based monthly tax credit to off-set the cost of private insurance. Following the release of that policy brief, President Trump tweeted that the “repeal and replacement of ObamaCare is moving fast!”

The Children’s Cause for Cancer Advocacy was founded to ensure the needs and perspectives of children with cancer and survivors are integrated into federal health care, research, and policy. And their voice absolutely must be heard in this - and in every - debate about healthcare reform.

We urge policymakers to protect children and adolescents with cancer and survivors as Congress considers – carefully and comprehensively – these replacement proposals. Combined, the Affordable Care Act, Medicaid and the Children’s Health Insurance Program (CHIP) currently cover over 40 million children and adolescents in our country. Medicaid covers more than a third of childhood cancer patients. Any changes must consider the impact on these vulnerable populations.

Children like Liam who are in need of active treatment and appropriate symptom management, as well as the nearly 500,000 childhood cancer survivors who need ongoing care, could be adversely affected by any significant disruption in the insurance market.

We support access to care for cancer patients across the continuum of their disease without a period of uncertainty in the insurance market that might result in loss of access to affordable insurance coverage and therefore access to care. For this reason, Children’s Cause supports the following elements of health care coverage:

  • Access to parents’ insurance coverage: Children and adolescents affected by cancer must continue to have access to their parents’ insurance coverage through age 26 as an option to ensure their continued care and subsequent quality of life and productivity.
  • Insurance market reforms: Children and adolescents with cancer must continue to be eligible for pre-existing condition exclusions and exemptions from waiting periods to receive coverage. Insurers should also continue to be prevented from retroactively denying coverage and imposing lifetime and annual coverage limits.
  • Access to pediatric providers: Children and adolescents suspected of having cancer must have access and timely referral to pediatric oncology specialists for screening, comprehensive initial evaluation, and diagnostic testing and treatment.
  1. Children and adolescents with cancer require coverage of coordinated care from a multidisciplinary team of pediatric cancer specialists, including physicians, nurses, social workers, psychologists and other health care providers.
  2. Early access to diagnosis and treatment is critical to improving survival and long term outcomes for pediatric cancer patients.
  • Survivors of childhood and adolescent cancer: Survivors of childhood and adolescent cancer require coverage for long-term follow-up care by specialists with expertise in the late effects of their treatment and disease. As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment, such as heart damage, bone malformations and secondary cancers.
  • Medicaid program: Medicaid is essential to ensuring all children with cancer have coverage and access to care; covering more than a third of childhood cancer diagnoses. We must ensure that the vital services provided under this program to children in need are not compromised.
  • Affordable coverage: For those not eligible for Medicaid, support for the purchase of health insurance should be made available to ensure that families can afford coverage for children and adolescents with cancer.

Children with cancer have significant health care needs, ranging from accurate diagnosis and appropriate therapies for their specific diagnosis, to management of side effects during treatment, and long-term survivorship care to address the late and long-term effects of cancer and cancer treatments. We urge Congress to make sure that health care reforms provide affordable, accessible coverage to all Americans, especially our most vulnerable.

Ask Congress to Support the Reintroduced STAR Act!

The Childhood Cancer Survivorship, Treatment, Access & Research Act of 2017 was introduced in both the House and Senate earlier this month as H.R.820 and S.292. 

The bipartisan STAR Act passed the House of Representatives late last year but failed to advance in the Senate. We have high hopes that we will see this bill - the most comprehensive childhood cancer legislation ever introduced in Congress - signed into law in 2017. Here's how you can help!

1. Check the cosponsor map to see if your Senators and Representative have signed on. (A reminder: With the end of the last legislative session, the former STAR Act legislation died and, with it, its previous cosponsor signatures. We start from scratch now!)

2. Use our Write Congress form to quickly and easily send a letter to your Members of Congress to thank them for their support or ask them to sign on! We are hoping to quickly gain as many cosponsors as possible to get momentum for this bill's passage.

3. Share with your friends and neighbors!

If you are willing to go above and beyond, please also consider reaching out to your Members of Congress during the upcoming District Work Period - the week of February 20th. 

Check out our step-by-step guide to Congressional District Office Visits to schedule an appointment with your Member. Another great option is to attend a Town Hall meeting in your area and pose a question about childhood cancer to bring more public attention to the issue. Call your Members' offices and ask when they'll next be speaking in your area!

P.S. - If you get the ear of your Member, we urge that you ask for their support of the STAR Act *and* stress the importance of affordable, accessible healthcare coverage for children with cancer and childhood cancer survivors.

"Dear Mr. President..."

We've asked families impacted by childhood cancer to write letters to President Trump upon his inauguration. Parent advocate Tony Stoddard granted us permission to share his letter in full here. If you have five minutes to send your own letter, please do so here.

Dear President Trump,

Congratulations on your inauguration. As you begin your term, I want to share my experience with childhood cancer to help illuminate the challenges facing our kids and families.

On January 20th, 2012, my son Cole died from neuroblastoma cancer:  he was only five years old. 

Cole had a great passion for life. He was determined to squeeze as much happiness and laughter into each day as possible. Nothing brought him more joy than to make others smile and be happy. He idolized his sister Tara and wanted to do everything she enjoyed; his taste in music, his pleasure in painting and crafts, his thirst for learning - it all came from his wanting to be like her. 

He was inseparable from his identical twin brother, Troy. They did everything together from the moment they woke each morning. They would sit together on the same chair at the kitchen table for breakfast, then play together with their fire trucks, Legos, and matchbox cars. When it was time to go out and play, they rode their bikes together, dug in the dirt together, and sometimes fought together, always ending their little scuffles with a hug and an “I'm sorry” and then go right back to playing. At night, they insisted on having their beds next to each other’s. Many nights Michelle and I would sneak upstairs while they slept and just watch them, cuddled as one, their arms around each other. Michelle would often take pictures of the way they slept so close. I would worry that the flash from the camera might wake them up. I'm so glad now that we have those pictures to always enjoy and remember the intense closeness they shared. 

Every so often, while the other children were playing, he would just lay down in the grass or snow, put his hands behind his head and just stare up at the sky. I frequently wonder what such a young boy could have been pondering as he looked upwards.

Cole loved to play all sports: baseball, soccer, football and basketball. He was a naturally gifted athlete. He would sink basket after basket without effort, hit the baseball a mile, and he had a strong accurate arm. In the winter, I was amazed at how easily he could nail me in the face with snowballs. I smile when I recall Cole running with his sister, brother, and cousins; he skipped more than ran with a magnificent look of joy on his face. 

He truly appreciated life and especially the outdoors. Every so often, while the other children were playing, he would just lay down in the grass or snow, put his hands behind his head and just stare up at the sky. I frequently wonder what such a young boy could have been pondering as he looked upwards. 

He had a depth and insight into life that most adults will never acquire. At times, I would get frustrated or stressed out and I would occasionally lose my patience and start raising my voice. Cole would just look at me with that little smirk of his, as if to tell me lighten up, it's not that serious. As parents, we are supposed to teach our children, but I learned more from Cole. Most things that we get stressed out about or upset over really aren't that serious. When Cole got sick I learned how very true that is. 

For the year and a half that Cole was being treated for neuroblastoma cancer - the surgeries, chemotherapy, radiation, and the hundreds of medicines and needles - he rarely slowed down. He continually bounced back, determined to keep up with the other children. While he was at the hospital, he delighted and entertained the doctors, nurses, security guards and the other workers who he met with his eagerness to share his love and humor. He was always giving an “I love you," a hug, or the opportunity for them to hold one of his many stuffed animals which he called his “friends.” 

Cole was also quite the little flirt. I remember one time when I first brought him up to the playroom at Tufts Medical Center, a very pretty girl who worked there came over and asked him if he wanted to paint. Cole asked her what her name was. She told him Carrie, he then asked her where she lived. She said, “I live in Boston.” Then he asked, “What's your phone number?” I remember thinking: “That's my boy!” 

Eventually Cole's illness did slow him down but not before we got to spend Christmas and New Year’s together as a family. Near the end, Cole looked up at my wife and I and gifted us with these words, “Smile, Be Happy!” On the night before Cole left us, he kept asking me to sing him songs. I sang him all of his favorite bedtime songs. After a while I ran out of songs that I knew the words to. Even though he never really cared for the show Barney, I started to sing the theme song. "I love you, you love me. We're a happy family. With a great big hug, and a kiss from me to you, won't you say you love me too." He flashed the biggest smile and kept asking me to sing it over and over. That song allowed me to see his smile one last time. 

That is a little bit of who Cole was, but to me he is still a hero. He is the driving force behind my desire to increase Childhood Cancer Awareness, and he still continues to bring joy to people when they need a reminder to "Smile, Be Happy." 

Please do more for children like my son Cole who are killed by cancer each year.

Please do more for children like my son Cole who are killed by cancer each year. Please start by lighting the White House Gold in September during Childhood Cancer Awareness Month to show us you stand with our kids. Also, although childhood cancer is the number one killer by disease of kids in our country, the National Cancer Institute devotes less than 4% of its cancer research budget to childhood cancer research. Our kids deserve better than this.

In 2017, approximately 16,000 children and adolescents will be diagnosed with childhood cancer, which remains the leading disease killer of kids. By the end of your first term in office, there will be at least 500,000 childhood cancer survivors in the United States, and two-thirds of them will be suffering from serious long-term effects from their treatment.

Childhood cancer is not a partisan issue but instead a critical moral issue affecting the health and well-being of our nation's children. These children are counting on your leadership to ensure that there are no disruptions in insurance coverage or cuts to cure-seeking research funding.

God Bless,

Tony Stoddard (Cole’s Dad)

Farewell to 2016: Our Year in Review

We made real progress this year on important policy issues impacting children with cancer and childhood cancer survivors. As the year comes to a close, we want to thank you for your support and share some of the highlights of our year with you.

We kicked off 2016 with a refresh, welcoming a new CEO and launching a brand-new website. From there, we took off running full speed ahead! 

 

- We launched the Kids Action Network, a new grassroots advocacy program to create a cadre of engaged and effective advocates around the country. (Join here!)

- The 5th Annual Alliance for Childhood Cancer Action Day brought approximately 200 advocates to DC, resulting in a big STAR Act milestone: within days of advocates’ visits to Capitol Hill, more than half of the U.S. House had become co-sponsors!

- In June, the Children’s Cause hosted a Congressional briefing about critical childhood cancer survivorship issues.

- A notable mention during September’s busy slate of Awareness Month activities was the release of the childhood cancer landscape report, "Translating Discovery into Cures for Children with Cancer." Our president and founder Susan Weiner served on the report’s 7-person Steering Committee.

- In October, we co-hosted a Pediatric Oncology Workshop with PhRMA and BIO, convening a wide range of stakeholders to discuss challenges in developing new drugs for children with cancer and exploring potential approaches to solving them. 

- Last month, we presented the inaugural Rosen Research Award to Mary McCabe at our annual New York Reception. Ms. McCabe is the Director of the Cancer Survivorship Initiative and Memorial Sloan-Kettering, where she plans to initiate a guest lectureship focused on the ethics issues related to the development of new therapies for children.

- And in this final month of the year, we celebrated the STAR Act's passage in the House of Representatives. Despite its failure to advance in the Senate, its House passage was a landmark moment for our community. We also launched a new monthly advocacy webinar series, diving into childhood cancer policy prospects under the new Congress and Administration in the first installment.

We're proud of the year we've had, and we're grateful for friends like you who make this progress possible. As we look ahead to a new slate of challenges and opportunities in 2017, we need you to stick with us -- there's much more work to be done, and we can't do it without you. Please consider making a tax-deductible gift before the year is over to help us enter the new year with strength: Give now.

Thank you for all that you do to help us create a world where every child with cancer can live a long and healthy life.

Fall 2016 Pediatric Oncology Workshop Attendees Resolve to Pursue Creation of Public-Private Partnership

In late October, we co-hosted a pediatric oncology workshop with PhRMA and BIO, convening a diverse group of key stakeholders and experts in pediatric oncology drug development to discuss scientific and operational challenges of developing new drugs for children with cancer and to explore potential approaches to solving them. For the first time, this workshop brought together key stakeholders in oncology drug development for childhood cancer – patient groups, academia, many of the country’s leading pediatric oncologists, FDA, NIH, and biopharmaceutical companies – who expressed an unprecedented, collective commitment to work together for the benefit of children with cancer. 

Full summary: Workshop on Novel Approaches for Pediatric Drug Development for Unmet Medical Need: Addressing Scientific and Operational Challenges in Pediatric Oncology

Workshop presentations included unique perspectives on challenges encountered in efforts to accelerate the development of new drugs for childhood cancer, including five real-life case studies from biopharmaceutical companies.  The meeting continued with a working discussion on how the identified challenges might be overcome and how to accelerate the availability of innovative medicines for children with cancer.

Participants highlighted the importance of continued stakeholder discussions of the prioritization of diseases, molecular targets and therapeutic strategies as keys to improving the development of new oncology drugs for childhood cancer.  Participants agreed that while several scientific and regulatory strategies could begin to address these challenges, other approaches will be needed, for example, better leveraging of pre-clinical data to inform initial testing in children and novel clinical trial designs, such as biomarker-directed master protocols as in the NCI’s Pediatric MATCH trial.

At the meeting’s conclusion, workshop participants agreed on the following next step:

“The attendees of the Pediatric Oncology Workshop resolved to pursue the creation of a pre-competitive public-private partnership that will explore potential approaches to solving the identified challenges.”

The scope of a pre-competitive public-private partnership will require clear definition as the attendees expressed the need for the new forum to allow for global collaboration.  The pre-competitive public-private partnership could address many of the scientific and operational barriers identified in the workshop. In addition, workshop participants agreed to explore how to better leverage existing cooperative infrastructures to expedite the evaluation of drugs for children with cancer.

This workshop marks a new phase in multi-stakeholder engagement and presents an exciting opportunity for collaboration to advance the environment for the development of new and better therapies for treating children with cancer.

House Passes STAR Act! Your move, Senate.

This is a day two years in the making for the childhood cancer advocacy community: Today, the U.S. House passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act! The bipartisan STAR Act is the most comprehensive childhood cancer legislation ever introduced, and we're so close to making it law! But we have just THREE DAYS to get the bill passed by the Senate before Congress adjourns for the year.

We need all hands on deck as we push the Senate to vote on the STAR Act this week. First things first, please take a moment to thank your Representative for taking action on STAR. Then help us turn up the pressure on the United States Senate.

Here's how: 

1. Check the Senate co-sponsor map.

2. If your Senator already supports the STAR Act, thank them on social media AND call their office to ask for their support of this bill's passage before Congress adjourns on Friday. Be sure to tell them you are a constituent! 

3. If your Senator does not yet support the STAR Act, please call their DC and their state office and ask for their support.

4. We're especially focused on Senate Leadership - Senators Mitch McConnell, Harry Reid, Lamar Alexander, and Patty Murray. If you live in Kentucky, Nevada, Tennessee, or Washington state, your voice will be critical in this effort. Please reach out to these offices ASAP - and ask your neighbors to do the same!

Suggested Social Media Messages:

  • House has passed the Childhood Cancer STAR Act (HR3381)! Your turn, Senate: @SenateMajLdr @SenatorReid @SenAlexander @PattyMurray

  • @[SENATOR] - Kids with cancer need you to pass the #STARAct this week!

Make it even easier: Use SoundOff for pre-populated messages!


THURSDAY WEBINAR: What Does the New Administration and Congress Mean for Childhood Cancer?

We'll dive deeper into the STAR Act and the outlook for other critical legislative issues on a webinar this Thursday at 5pm EST. There is still time to register

Featured Speakers:

  • George Dahlman, CEO of Children's Cause

  • Ziky Ababiya, Legislative Assistant to Rep. Chris Van Hollen

  • Thomas Rice, Legislative Assistant to Rep. Michael McCaul

We have a limited number of spots left! Register now: 

https://attendee.gotowebinar.com/register/7705738506003757827

The Close of One Congress - And Preparing for Another

DCSunset.jpg

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.