CCCA's Founder Presents on Public Private Partnerships at International Meeting


Our president and founder Susan L. Weiner, PhD, presented at last week's ACCELERATE pediatric oncology conference in Brussels. Dr. Weiner discussed the critical need for a public private partnership (PPP) to develop drugs for children when there is no associated adult development program.

Dr. Weiner’s presentation continues a Children’s Cause effort to identify novel business and collaborative arrangements to address this development gap.  The PPP has captured the imagination of several private institutions, including the Biden Cancer Initiative.We look forward to keeping the childhood cancer community updated as this work continues to progress.

CCCA's First Webinar of 2018 Highlights Online Resources

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Our 2018 Webinar Series kicked off with an hour-long tour through the maze of support services and resources available to families of kids with cancer and survivors. "Navigating the Childhood Cancer Journey" delved into some of the best tools available to aid in a child's journey, from diagnosis to survivorship.

Our experts discussed a wide range of support tools, including:

  • The Patient Advocate Foundation, which offers debt crisis assistance, insurance enrollment assistance & insurance navigation assistance -- all free of charge to patients & families.
  • Social workers and childhood cancer camps, like Camp Sunshine at Sebago Lake in Casco, Maine. Camp Sunshine's Psychosocial Director Nancy Cincotta discussed the impact of a childhood cancer diagnosis on the whole family, from parents and grandparents to siblings, and the important role that social workers play in helping families navigate the hospital system and overcome their unique challenges and situations.
  • Hope Portal, a new database of childhood cancer resources designed to help families quickly and easily find the childhood cancer support services that best match their family's particular needs.

A recurring theme in the webinar was the importance of finding the right support early on in a family's journey, to maximize the effectiveness of available support and minimize a family's hardships:

We especially encourage families to take a moment to explore the new Hope Portal, a centralized source of pediatric and young adult cancer resources brought to the community by the Coalition Against Childhood Cancer. Hope Portal lets users customize their search to find reliable childhood cancer-related assistance quickly and easily. Visitors to the Hope Portal can search the database by specifying diagnosis, geographic location and the type of assistance needed (i.e. scholarships, transportation assistance or cancer camps).

Joey McMahon of KBI Biopharma, Hope Portal's technical lead, urges families to reach out with their feedback after trying out Hope Portal, as the tool remains in a soft launch phase of development and is still being refined.

The full recording of this January 31st webinar is available below.

Our next webinar - "Advocacy Tools and Tactics: How to be the Voice of Change" - will be offered exclusively to members of our Kids Action Network. Grab your free membership today!

After long delay, CHIP receives 6-year reauthorization

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Congress agreed to a deal to re-open the government with a Continuing Resolution that includes a 6-year extension of the Children's Health Insurance Program. Coming 114 days after CHIP expired, this reauthorization provides long-awaited relief to millions of American families who depend on CHIP for their kids' healthcare, including many families of children with cancer.

The details, from The Washington Post:  "States, which share responsibility for CHIP, had been running short of federal funds for their programs at different paces. Connecticut became the first to freeze enrollment just before Christmas, and at least five states notified families that they would need to do so soon. Eleven other states were expecting to run out by the end of next month.

The measure approved Monday will ward off that escalating drama, providing about $124 billion through 2023. For the first two years, federal money will pay for at least 88 percent of the program’s expenses in every state — keeping a heightened federal match that was part of the Affordable Care Act. After that, the federal share will decrease over two years to its level before the 2010 ACA."

See also: CHIP is finally getting funded -- after 114 days without a budget (Vox) →

We thank those of you who used our CHIP action alert to send nearly 500 letters to Congress over the past several months urging a reauthorization of CHIP on behalf of the families of children with cancer who rely on this program for their child's care.

CHIP was enacted in 1997 to help states reduce the numbers of uninsured children.  It focuses on low-income kids in working families who don’t have access to job-based coverage but earn too much to qualify for Medicaid.  Some 36 million children in this country are covered by Medicaid and/or CHIP.  Approximately one third of children with cancer depend on these programs for their treatment.  Since the program started, the uninsured rate for children age 18 and under has fallen by 67.9%, from 14.9% to 4.8%.

Over its twenty-year life, CHIP has been a winner for states and children alike. We thank Congress for finally providing families with the assurance of a 6-year program extension.

STAR Act Update : HELP Committee Markup on the horizon!

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The Alliance for Childhood Cancer reports this week that the Senate HELP Committee is planning a Public Health Mark-Up for the first week of February and the STAR Act may be included on the agenda for the mark-up.  If the HELP Committee approves the STAR Act, Chairman Alexander has pledged to move the bill quickly to the Senate for approval and send it to the House for consideration, where we currently have 345 cosponsors - 80% of the full House - signed on to the STAR Act.

  Senate STAR Act Original Sponsors:  Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), Johnny Isakson (R-GA)   Senate STAR Act Cosponsors : Bill Cassidy (R-LA), Todd Young (R-IN), Susan Collins (R-ME), Roy Blunt (R-MO), Chuck Grassley (R-IA), Marco Rubio (R-FL), David Perdue (R-GA), John Kennedy (R-LA), Rob Portman (R-OH), Joni Ernst (R-IA), Deb Fischer (R-NE), Robert Casey (D-PA), Sheldon Whitehouse (D-RI), Joe Manchin (D-WV), Debbie Stabenow (D-MI), Jeanne Shaheen (D-NH), Kirsten Gillibrand (D-NY), Angus King (I-ME), Chris Coons (D-DE), Cory Booker (D-NJ), Richard Blumenthal (D-CT), Bill Nelson (D-FL)

Senate STAR Act Original Sponsors: Jack Reed (D-RI), Shelley Moore Capito (R-WV), Chris Van Hollen (D-MD), Johnny Isakson (R-GA)

Senate STAR Act Cosponsors: Bill Cassidy (R-LA), Todd Young (R-IN), Susan Collins (R-ME), Roy Blunt (R-MO), Chuck Grassley (R-IA), Marco Rubio (R-FL), David Perdue (R-GA), John Kennedy (R-LA), Rob Portman (R-OH), Joni Ernst (R-IA), Deb Fischer (R-NE), Robert Casey (D-PA), Sheldon Whitehouse (D-RI), Joe Manchin (D-WV), Debbie Stabenow (D-MI), Jeanne Shaheen (D-NH), Kirsten Gillibrand (D-NY), Angus King (I-ME), Chris Coons (D-DE), Cory Booker (D-NJ), Richard Blumenthal (D-CT), Bill Nelson (D-FL)

What Should We Be Doing Now? There are currently 27 Senators signed on to the STAR Act, with an additional nine Democratic Senators who are on a waiting list to sign on as we get more GOP Senators - to keep the bill as bipartisan as possible.  Congressional contacts have urged the childhood cancer community to spend the next few weeks adding as many additional Senators as possible, which will help give momentum to the bill as it moves out of Committee for consideration by the full Senate.

This map shows current co-sponsorship in the Senate (gold stars are cosponsors). The red telephones indicate that the Senator is a Member of the HELP Committee but not yet a cosponsor of the STAR Act. Please reach out to your Senators and urge them to sign on in advance of the February mark-up!

Visit our action alert page to take quick and easy action. Thank you!

FDA Seeking Patient Advocates for New Initiative

The Food and Drug Administration (FDA) recently announced the formation of a Patient Engagement Collaborative (PEC), an "ongoing forum to discuss how to achieve more meaningful patient engagement in medical product development and other regulatory discussions." (FDA Voice Blog) FDA has issued a call for nominations of patient advocates interested in serving on this new Collaborative.

FDA is seeking a group of diverse representatives from the patient community to participate in the PEC, including patients with personal disease experience and caregivers. (Request for Nominations)

The Children's Cause is urging parents of children with cancer or young adult survivors to consider applying for PEC to ensure that the voice of childhood cancer is heard in the regulatory and review process.

The deadline for applying to the PEC is Monday, January 29, 2017. Please reach out to Children's Cause staff at if you are interested in applying and would like assistance with the nomination.

CHIP Funding Restored -- For Now.


Just before heading home for the holidays, Congress finally passed a CHIP funding extension -- nearly three months after the program expired on September 30th. The $2.85 billion in CHIP funds came as part of a stopgap government spending bill aimed at averting a government shutdown.

NYTimes: Congress Passes Stopgap Bill to Avoid Government Shutdown Against a Friday Deadline →

The CHIP provision supposedly provides money for the program through March -- but some health advocates are skeptical the funds will last until even February, considering CHIP is a $13.6 billion dollar program (in FY 2016) and this funding bill of less than $3 billion is meant to cover the first half of the fiscal year, dating back to October 1.

CNN: Congress Provides Short-Term Funding for Children's Health Insurance Program →

At the Children's Cause, we are relieved that families of children with cancer and other critical conditions now have some small measure of assurance that their child's healthcare is protected heading into the new year. But we are disappointed that this funding does not provide long-term stability to the bipartisan program and frustrated that families of the 9 million kids who rely on CHIP funding will continue to face uncertainty and stress.

CBS: How States are Dealing with the Uncertainty Behind Children's Health Insurance →

Securing a clean, multi-year CHIP renewal will remain one of our top priorities at Children's Cause in early 2018. Please continue to follow us - through our newsletter, Facebook and Twitter - for the latest updates and to find out how you can take action from home around this ongoing effort. In the meantime, you can continue to write Congress through our action alert to make sure they know this remains a pressing concern for American families and kids.

To those making year-end charitable donations, please know that your support right now enables us to do our advocacy work year-round and fight for life-saving programs like CHIP. Make your tax-deductible gift here.

Year in Review: Highlights of 2017

Thank you! With your help, we made real progress this year on important policy issues impacting children with cancer and childhood cancer survivors.

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As the year comes to a close, we want to share some of our highlights from 2017 with you:

After years of effort, we achieved passage of the Research to Accelerate Cures and Equity for Children (RACE) Act, important legislation affecting kids and families with cancer that was signed into law in August. Passage of the RACE Act was a landmark achievement made possible by community collaboration, intensive stakeholder negotiations with Congressional champions, and all of you -- grassroots advocates speaking up to make your voices heard.

The year kicked off with the re-introduction of the Childhood Cancer STAR Act -- legislation that now has support from approximately 75% of the United States House of Representatives! The bipartisan STAR Act is the most comprehensive legislation ever taken up by Congress.  Its passage would be the culmination of many years’ worth of research, relationship-building and hard work.


We launched a free Advocacy Toolkit - a guide to grassroots advocacy that arms both new and experienced advocates with tools and resources needed to contact and impact Members of Congress about policy issues relating to childhood cancer. Through our new toolkit and our expanding Kids Action Network, we're mobilizing and engaging more advocates than ever before in pursuit of our mission to achieve a day when every child with cancer can live a long and healthy life.

We investigated and highlighted problem areas for families of children with cancer, including coverage access and financial toxicity, through a webinar, a family survey, and co-hosting a panel discussion on Capitol Hill. We're turning the lessons we've learned into concrete policy solutions to pursue in the coming year.

We sent thousands of letters to Congress about critical policy priorities. We also worked with coalitions like the Alliance for Childhood Cancer to bring advocates to Capitol Hill to meet with their legislators face-to-face and share their story.

In national debates on healthcare, we have spoken up time and again to protect affordable, accessible, high-quality care for children with cancer and survivors. Thanks to strong advocacy like ours, children with pre-existing conditions continue to receive care without discrimination and there are no lifetime caps on a child's coverage. Our battle to renew the successful, bipartisan Children's Health Insurance Program continues to gain support in Congress.

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We were proud to present the second annual Leonard M. Rosen Research Award to Aaron Kesselheim, MD, JD, MPH, in New York City. Dr. Kesselheim is Director of the Program On Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, and Associate Professor of Medicine at Harvard Medical School. Dr. Kesselheim was selected for the second annual presentation of this award in recognition of his critical research advancing treatments and access for children battling cancer.

In other notable news from 2017, our founder Susan Weiner, PhD, received the Partners in Progress Award from the American Society of Clinical Oncology over the summer. The Partners in Progress Award recognizes a person involved in patient advocacy activities that supports legislative efforts around research, treatment, prevention and care.

We're proud of the year we've had, and we're grateful for friends like you who make this progress possible. 

CHIP Expired Two Months Ago: When Will Congress Act?


1 in 8 children is at risk of losing access to health care since Congress let funds for the Children's Health Insurance Program (CHIP) expire two months ago. It’s time for Congress to prioritize our kids and #ActOnCHIP. 

  • Thousands of kids could lose health insurance next month if Congress doesn't act fast (ABC News, 11/29) : "Eleven states are anticipating running out of funding by the end of the year, according to an analysis by the Kaiser Family Foundation -- California, Oregon, Idaho, Nevada, Utah, Arizona, Ohio, Mississippi, Pennsylvania, Connecticut and Hawaii. Another 21 states anticipate their funding to run out soon after the new year."
  • The damage to children's health insurance is already being done (The Atlantic, 11/22) : "Hill staffers insist and the states anticipate that Congress will pass new funding for CHIP in the coming weeks. But the situation has left doctors fuming, administrators bewildered, parents frightened, and politicians shocked. Even if no states end up running out of money and no kids end up losing coverage, the dithering has already diverted state resources, degraded state programs, and sapped state coffers, and Congress’s dysfunction has pushed the stability of an effective, respected program with bipartisan support into doubt."

Please join us in urging lawmakers to #extendCHIP. Here are a few ways you can help right now:

  1. Send your Congressional representatives a letter using our action alert. (Tip: Click the Take Action button for the form letter tool.)
  2. Tweet your Congressional representatives. Use the hashtags #ActOnCHIP, #CHIPworks or #ExtendCHIP to be seen and shared by other advocates in the public health community! For an easy, pre-written tweet that will go right to your representatives' Twitter accounts, just fill out your info here.
  3. Send a letter to the editor of your local paper to make sure your community is informed. Lawmakers pay a lot of attention to letters in their hometown papers! Below is sample language for you to use in a letter.  If this is your first time writing a letter-to-the-editor, our Advocacy Toolkit ncludes a section to guide you through the process in more detail.

Thank you for speaking up to protect healthcare for children who rely on CHIP!

Sample Letter-to-the-Editor:

Dear Editor:

While Congress is focused on taxes, there is a critical program for children that is desperately hanging on.  And its fate will determine whether millions of children will have access to health care. The Children’s Health Insurance Program (CHIP) expired on September 30 but is still waiting to be acted on in the Senate. For every day Congress fails to act, more children are put at risk.  At least five states are set to run out of CHIP funding by the end of December.  CHIP provides affordable, comprehensive health insurance for children whose families earn too much to qualify for Medicaid but not enough to afford private insurance.  It’s an important program for all children who qualify – but it’s especially important for those who face serious and life-threatening illnesses like cancer.  

Families who are facing childhood cancer or other devastating diseases should not have to face financial ruin as a part of treatment.   Congress – and the Senate, in particular – should make the CHIP program a priority before year end and the parents of children with health care needs urge Senators _______ and _______ to be their voice and make sure the program is extended.


[your name & city]

Giving Tuesday is here!

This time of year, we always reflect on how grateful we are to our generous supporters. Because of you, we are making a real impact on the lives of children with cancer, survivors, and their families. 

This year alone, our impact (and yours!) has been felt. The Research to Accelerate Cures and Equity for Children (RACE) Act was signed into law in August, and support for the Childhood Cancer STAR Act continues to grow, with more than 300 co-sponsors in the House of Representatives.

In national debates on healthcare, we have spoken up time and again to protect affordable, accessible, high-quality care for children with cancer and survivors. Thanks to strong advocacy like ours, children with pre-existing conditions continue to receive care without discrimination and there are no lifetime caps on a child's coverage. Our battle to renew the successful, bipartisan Children's Health Insurance Program (CHIP) continues to gain support in Congress.

Our work is not possible without your support. Today is #GivingTuesday and we hope you will consider making a donation to support Children’s Cause for Cancer Advocacy today.

Spread the word! Be a #GivingTuesday social media ambassador with one of these sample tweets:

o     Today is #GivingTuesday! Please support @ChildrensCause on this global day of giving at

o     After #BlackFriday and #CyberMonday, let’s take time to give back for #GivingTuesday. Please donate to @ChildrensCause and support their mission as the voice for children with cancer, survivors, and their families.

o     #GivingTuesday is here! What is it, you ask? A global day of giving. Please consider donating in honor of #GivingTuesday to Children's Cause for Cancer Advocacy at

o     Americans spend about $5 on coffee a day. Consider giving up today and tomorrow’s cup to give to Children’s Cause for Cancer Advocacy this #GivingTuesday:

There is much more work to be done, and it is not possible without financial support. Thank you for making a #GivingTuesday donation today at!

Recognizing Parents of Children with Cancer for National Family Caregivers Month


In recognition of November as National Family Caregivers Month, we bring you some resources for advocates and tips for caregivers of children with cancer.

The Caregiver Action Network set this year's theme as Caregiving Around the Clock, in recognition that a caregiver's job never ends. The vast majority of family caregivers in this country are taking care of aging parents, but we want to shine a spotlight on parents who are taking care of their critically ill children, including children with cancer. 


Parents of children with cancer are all-too-familiar with the stresses of administering their child's medication, juggling work responsibilities, panicked middle-of-the-night ER visits, losing time with other children and family members during lengthy hospital visits, and everything else involved with the 24/7 management of a sick child's care.

In our own research, we found that 87% of parents we surveyed earlier this year reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months. 

Action Steps for Caregiver Month:

If you're an active parent caregiver:  Many parent caregivers report that their own self-care takes a big hit while their child is in treatment, but it's important to remember that your child needs you to be physically, emotionally and mentally healthy in order to be the best caregiver, advocate and (most importantly!) parent that you can be. Here are a few self-care tips for parent caregivers: 

- Many children's hospitals offer support groups for parents of children in treatment. Ask what's available, or check out to search in your area. If you're not interested in a support group, consider yoga, an art class, or even just a regular coffee date with a friend.


- Ask for - and accept - help from friends and family. Don't feel guilty about asking someone to stay with your child at the hospital for a day while you escape for a bit of 'me-time.' Remember that taking care of your mental health is another way of taking care of your child. 

- Get check-ups yourself -- and tell your doctor(s) about your caregiving role, so they understand some of the unique stresses you're under.

If you're an advocate: President Trump issued a formal proclamation recognizing the month and the devotion of caregivers. The Caregiver Action Network has provided this sample proclamation for states and local governments, and there's still time in the month to reach out to your elected representatives.

Finally, consider sharing your story as a caregiver to a child with cancer. Being a parent to a child with cancer can be such an isolating experience. What's the best piece of advice you have to offer to another parent caring for their child during treatment? Please share below!

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