September 2017: Congress Set to Miss CHIP Renewal Deadline

Congress Set to Miss Saturday CHIP Renewal Deadline


The current Children’s Health Insurance Program (CHIP) is set to expire on October 1st -- a deadline that Congress almost certainly is going to miss. If the program isn't renewed, millions of vulnerable children would face a loss of critical health insurance coverage.

While most states will manage to keep CHIP running past the October 1st expiration of federal funding, at least ten states will run out of funding by the end of the year and most other states' funds will be exhausted by March 2018. Advocates also stress that there will be disruptions to the program before states exhaust their funding, and some states are beginning to issue warning notices to families. Minnesota's state health department sent an urgent letter to its Congressional delegation warning that its funds are depleted and it will have to take "extraordinary measures" to keep kids covered.

On Thursday, the House Energy and Commerce Committee announced that it will markup legislation to reauthorize CHIP on October 4th -- days after the program is set to expire.

Nine million American children are covered by CHIP. Approximately one-third of children with cancer depend on either Medicaid or CHIP for their treatment.  

As advocates for children with cancer, we're asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments -- without further delay. Take action.

Childhood Cancer Awareness Month Comes to a Close

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September was packed full of awareness events around the country, and we were proud to take part in several here in Washington, DC:

  • CCCA Social Event: Children's Cause held a fundraising event at Takoda Restaurant, bringing together friends old and new for a fun social evening at a great spot in DC earlier this month. We're grateful to everyone who showed up and bid on the terrific silent auction items available. We're especially thankful to the event sponsors, including these Silver Level Sponsors: The Association for Accessible Medicines, Biotechnology Innovation Organization (BIO), Lilly Oncology, Pfizer, Russell and (CCCA Board Chair) Lori Ring, and our founder Susan L. Weiner, PhD.
  • Congressional Childhood Cancer Summit: The 8th annualCongressional Childhood Cancer Summit on Capitol Hill brought lawmakers together with pediatric cancer advocates, experts and survivors to discuss recent legislative victories - like the Race for Children Act - and identify ongoing challenges facing kids with cancer and survivors. We thank the co-chairs of the Congressional Childhood Cancer Caucus - Representatives Michael McCaul, Jackie Speier, GK Butterfield, and Mike Kelly - for their strong leadership and support.
  • Atlantic Forum on Children and CancerAtlanticLive! hosted a well-attended forum on childhood cancer at the Newseum. Along with substantive panel discussions on immunotherapy and big data, we also had the pleasure of hearing perspectives from several childhood cancer survivors.
  • CureFest: The highlight of the month for many childhood cancer families was CureFest on the National Mall. Children's Cause was proud to be a sponsor of this year's CureFest, which brought over 80 foundations and hundreds of families together in the nation's capitol for two days of speeches, marches, rallies, walks and entertainment. We made many new connections with families impacted by childhood cancer and thank everyone who stopped by our booth to say hello.

Aside from CureFest, other notable coalition events from the month included the Rally for Medical Research Hill Day, an Alliance for Childhood Cancer Luncheon and Art Exhibit on Capitol Hill, and a Coalition for Childhood Cancer (CAC2) networking reception. We thank our coalition partners for their hard work to bring a real sense of community collaboration to awareness month.

These are just a fraction of the events that took place in the Capitol and around the country. We'd be remiss not to mention that Hyundai Hope on Wheels held its own set of events in DC, as they do every September.

Capitol Hill Briefing on Access Issues

The Children's Cause, in partnership with the American Cancer Society Cancer Action Network, hosted and moderated a panel discussion earlier this week on issues impacting childhood cancer patients and survivors, including how they access coverage and receive treatment. 

Attendees at the briefing heard from Melissa Horn, a 14-year survivor of Hodgkin's lymphoma, who spoke about her insurance challenges as a young adult survivor and her fears about the future stability of quality coverage. The University of Utah's Anne Kirchoff, PhD, MPH, discussed findings from a national study of long-term pediatric and adolescent cancer survivors. Dr. Kirchoff's findings show that childhood cancer survivors have a history of insurance coverage denial and spend a much higher percentage of their income on medical expenses. Survivors are more likely to have problems paying their medical bills and therefore delaying necessary screenings and/or care.

Dr. Kira Bona of Boston Children's Hospital discussed the impact of poverty and financial hardship on families facing a childhood cancer diagnosis, including the associated negative health and survivorship outcomes. Finally, Elizabeth Wright Burak, MPP, MSW, at Georgetown University Center for Children and Families, provided some policy perspective to the discussion, including the critical importance of Medicaid and CHIP in providing health coverage to children.

A full recording of the briefing is available on our website.

Children's Cause Launches Advocacy Toolkit

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Children's Cause launched a brand-new advocacy toolkit for families impacted by childhood cancer and those who want to make a difference on their behalf.

The CCCA Advocacy Toolkit is a guide to grassroots advocacy, arming both new and experienced advocates with tools and resources needed to contact and impact Members of Congress about policy issues relating to childhood cancer. 

The free 50-page PDF is available for immediate download at We hope this tool will bring new advocates into the fold, to expand our growing community's collective voice.

Please help us spread the word about this toolkit by sharing the download link with your friends and family.

Tickets Now Available for 11/2 New York Reception

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Tickets are now on sale for our annual cocktail reception and silent auction in New York City. This year's event is taking place Thursday, November 2nd from 7pm - 9:30pm at the James Burden Mansion.

The reception will feature Gregory Reaman, MD, Associate Director for Pediatric Oncology at the FDA's Oncology Center of Excellence, as our guest speaker. Also at the event, the 2017 Leonard M. Rosen Memorial Research Award will be presented to Aaron Kesselheim, MD, JD, the Director of the Program on Regulation, Therapeutics and Law and Associate Professor of Medicine at Harvard Medical School.

Click here for our secure ticket purchase form.

Jessica Kean