Delay in Renewing Children's Health Insurance Programs Putting Kids at Risk

Funding for the Children's Health Insurance Program (CHIP) expired a full month ago, putting the healthcare of 9 million children at risk. CHIP has a proven track record of providing high-quality, cost-effective coverage for children with cancer.

As Congress stalls in deliberating over the future of the bipartisan program, states are left scrambling. Experts have testified in recent Congressional hearings that many states are just weeks away from setting in motion processes to establish waiting lists and send out dis-enrollment notices to families. Once undertaken, these actions will have an immediate effect, creating chaos in program administration and confusion for families.

We urge our nation’s leaders to work together to enact a five-year extension of CHIP funding to ensure treatment and care for children with cancer and survivors -- without further delay. This is an important opportunity for meaningful, bipartisan action for young Americans facing life threatening illness. Take action here to press Congress for immediate action on CHIP renewal.

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Open Enrollment in Healthcare Marketplace begins November 1st

The 2018 enrollment period begins on November 1st and will run through December 15th, for coverage that begins January 1st. This open enrollment period applies in the 39 states that utilize the federal marketplace created by the Affordable Care Act. 

With a politically uncertain healthcare landscape, there's significant consumer confusion about the 2018 marketplace. NPR offers the following clarifications:

• People who qualify for tax credits or cost-sharing subsidies to lower their deductibles and copayments will get them. Plus, "in some cases, plans providing higher levels of coverage may be more affordable than less generous plans."
• At least one insurer will offer marketplace coverage in every sign-up area.
• Those with pre-existing conditions like a cancer diagnosis are still guaranteed coverage and can't be charged more.
• Those without insurance in 2018 will still owe a fine, unless you meet specific exclusion guidelines.

This year's six-week enrollment period is shorter than previous years and in-person help has been reduced, so experts advise shopping sooner rather than later. If you need help navigating your options, free assistance is available: Call 1-800-318-2596 or visit http://localhelp.healthcare.gov
 

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Quick Links: News Round-Up

• Ned Sharpless, MD, was sworn in as the new director of National Cancer Institute (NCI) on October 17th. Dr. Sharpless takes over for acting director Doug Lowy, MD, who will return to his role as deputy director and his work within the NCI Center for Cancer Research. (NCI Press Release)
• A new study finds that one-in-four full-time employed young adult survivors of childhood cancer report a history of "job lock" - or staying at a job in order to keep health insurance. Job lock has implications on survivors' employment trajectory and earnings potential. (JAMA Oncology)
• Researchers have developed a model including genetic variants to predict the risk of subsequent central nervous system tumors in survivors of childhood CNS cancers, a step toward informing surveillance for earlier detection. (Journal of Clinical Oncology)
• The Coalition Against Childhood Cancer (CAC2) launched Hope Portal, an easy-to-navigate resource guide for childhood cancer families with a robust list of organizations that provide support and assistance.

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This Week: Our Signature Event of the Year!

Tickets are still available for our annual cocktail reception and silent auction in New York City, 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.

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#GivingTuesday is November 28th -- the Tuesday after Thanksgiving. Please support Children's Cause this #GivingTuesday, and together we can make a significant impact for our children with cancer, survivors, and their families. Get ahead of the game and make your #GivingTuesday donation today at this link.

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.

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Childhood Cancer Awareness Month Comes to a Close

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 Cancer: AtlanticLive! 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.

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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.

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Children's Cause Launches Advocacy Toolkit

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 www.childrenscause.org/toolkit. 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.

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Tickets Now Available for 11/2 New York Reception

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.

September Preview: Childhood Cancer Awareness Month

Advocates, young professionals, and young adult survivors are invited to join us in Washington, DC on Tuesday, September 12th for a social event at TAKODA Restaurant, from 6-8pm.

Tickets are still available but quantities are limited so order yours today! There is a discount rate for young professionals age 35 and younger, and we are offering complimentary tickets to young adult survivors of childhood cancer. Buy your tickets here, or reply to this email to inquire about a complimentary survivor ticket.

If your organization or company may be interested in sponsoring this event, please see our Sponsorship Benefits (PDF).

Learn more on our event page.

Other Awareness Month Events to Follow:

• Congressional Summit & Alliance Art Exhibit on September 14th: Immediately following the 8th annual Congressional Childhood Cancer Summit is the Alliance for Childhood Cancer Art Exhibit and Luncheon on Capitol Hill. The Alliance is seeking art submissions from children with cancer, survivors or siblings to feature at this event. The submission deadline is September 8th!
• Rally for Medical Research National Day of Action on September 14th: For those unable to make it to DC this September, Rally for Medical Research organizers have made it simple to participate in their day of action from anywhere. Learn more.
• Atlantic Forum on September 15th: We'll be in attendance at this "Children and Cancer" forum at the Newseum the morning of Friday, Sept. 15th. Register here.
• CureFest on September 16th & 17th: Be sure to stop by the Children's Cause exhibit table if you'll be attending this year's CureFest on the National Mall!

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RACE for Children Act Becomes Law!

President Trump signed the RACE Act into law on August 19th, as part of the larger FDA Reauthorization Act (FDARA) passed by both chambers of Congress this summer.

We thank the President and Members of Congress for their bipartisan support -- and we especially thank each of you who reached out to your Representatives and Senators throughout this process.

FDARA is a five-year reauthorization of user fee programs, which fund the agency's drug and medical device reviews. The current user fee program is set to expire September 30th.

The childhood cancer community celebrates this hard-fought achievement. RACE Act provisions hail from a blueprint report that grew out of a working group of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer in 2015-2016. For the past year, childhood cancer stakeholders - including the Children's Cause - have been involved in intensive bipartisan, bicameral negotiations with Congressional champions to make these recommendations a reality.

This legislation calls for patients to be part of the discussion with FDA about what drugs should be developed for kids. Children's Cause will continue to be at the table speaking up for our kids, and we continue to rely on your support to make us a stronger voice in Washington.

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Children's Cause Calls on Congress to Pass Clean CHIP Renewal

The current Children’s Health Insurance Program (CHIP) is set to expire onOctober 1st and - if not renewed - millions of vulnerable children would face a loss of critical health insurance coverage.

While most states could manage to keep CHIP running briefly past the October 1stexpiration of federal funding, advocates have noted there will be disruptions to the program before states exhaust that funding. 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.  

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

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STAR Act: Seeking Senate Support from Key States

The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress. This bipartisan legislation will advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.

While 60% of Members in the House of Representatives currently support this legislation, just 20% of the Senate has signed on as a cosponsor. This month, as part of a coordinated Alliance for Childhood Cancer effort, we specifically targeted eleven Senators from the states highlighted on this map (AK, CO, IA, NE, NV, OH, PA, KS, SC, TN, WI).

We heard from these offices that constituent feedback is critical -- please share this link with anyone you know from one of these states.

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Quick Links: Recommended End-of-Summer Reading

• 'Breakthrough' Leukemia Drug Also Portends 'Quantum Leap' in Cost,Kaiser Health News (8.23.17): "When doctors talk about a new leukemia drug from Novartis, they ooze enthusiasm, using words like 'breakthrough,' 'revolutionary' and 'a watershed moment.' But when they think about how much the therapy is likely to cost, their tone turns alarmist..."
• HPV Vaccine Uptake Lags in Childhood Cancer Survivors, MedPageToday(8.25.17): "Survivors of childhood cancers had significantly lower rates of vaccination against human papillomavirus (HPV) compared with the general population, despite having an increased risk of HPV-related morbidity, a study of almost 1,000 patients showed." (Original: Journal of Clinical Oncology)
• Austin company gets FDA orphan drug status in cancer fight, Houston Chronicle (8.18.17): "Curtana Pharmaceuticals announced this week it had received special status from the Food and Drug Administration for a treatment in the fight against glioblastoma in adults and brain tumors in children."
• Mapping Mutations that Drive Tumors in Childhood Cancer Survivors,Neuroscience News (8.6.17): "Neuroscientists have uncovered the genetic basis for why many long-term survivors of childhood cancer develop meningiomas, the most common adult brain tumour, decades after their treatment with cranial radiation." (Original: Nature Communications)

From our blog: 10 Years of Hope -- One Staffer's Reflection (8.28.17)

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A long, healthy life for every child diagnosed with cancer -- that's our mission here at the Children's Cause for Cancer Advocacy. And you are a vital part of everything we do!

September is Childhood Cancer Awareness Month, and there is no better time to support our work than now. Your monthly gift of $15 can help us to give voice to children with cancer, survivors and families.

Please start your monthly giving today.