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 Individuals who were diagnosed with a serious illness often found their coverage rescinded.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.

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!