Last Chance to Register for Wednesday's CCCA Webinar on Navigating Childhood Cancer Resources

This webinar is designed for families impacted by childhood cancer who want to be more informed about the resources and support services available to aid in their child's journey, from diagnosis to survivorship. If you've ever felt overwhelmed by the challenges facing your family and unsure where to go for help, please join us on Wednesday, January 31st at 3pm EST for this "Navigating the Childhood Cancer Journey" webinar. 

Register now.

Our experts will help guide you through the maze of support services and resources available to families of kids with cancer and survivors. 

Featured speakers will include:

• Beth Moore, Patient Advocate Foundation
• Nancy Cincotta, MSW, MPhil, Camp Sunshine
• Hope Portal Introduction, Coalition Against Childhood Cancer

Visit our webinar page to save the dates for our other scheduled 2018 webinars.

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After Long Delay, CHIP Receives 6-Year Reauthorization

Congress agreed to a deal last week 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 program's reauthorization provides for $124 billion through 2023. For the next two years, the federal government will provide at least 88 percent of CHIP expenses in every state -- an Affordable Care Act provision. After that, the federal match will gradually decrease to lower pre-ACA levels.

Over its twenty-year life, CHIP has been a winner for states and children alike -- which the Children's Cause has been talking about for the last several months. We thank Congress for finally providing families with the assurance of a 6-year program extension.

We especially 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.

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Childhood Cancer STAR Act Update

We anticipate that the Senate HELP Committee will hold a public health mark-up early in February, and the Childhood Cancer STAR Act (S.292) may be included on the agenda. 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 (H.R.820), where we currently have 350 cosponsors - over 80% of the full House! - signed on in support.

To be in the strongest position possible, we need more Senate support. Visit our blog to find out where your Senators stand and how you can help.

Be sure you're following Children's Cause on Facebook, Twitter and Instagram for the latest on the STAR Act.

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Quick Links | Recommended Reading

• New Screening Recommendation for Retinoblastoma: The American Academy of Pediatrics has endorsed an American Association of Ophthalmic Oncologists and Pathologists report recommending that at-risk patients be screened for retinoblastoma, an eye cancer most often seen in young children. The report defines "at-risk" as a person with a family history of retinoblastoma in a parent, sibling or close relative. Learn more.
• FDA Public Workshop -- CDER and You: The Food and Drug Administration Center for Drug Evaluation and Research (CDER) is conducting its third annual public workshop for patient advocacy groups on April 3rd. The workshop will include educational presentations about the drug approval process and safety issues. Interested patient advocates can register by March 20th for the in-person meeting in Silver Spring, MD, or to attend via webcast. Learn more.
• CAR T-cell Therapy Named Advance of the Year by ASCO: A team of cancer experts reviewed 31 new cancer therapies approved over the past year and named CAR T-cell therapy as the most significant, noting that its success in treating recurrent childhood leukemia (ALL) is "one of the most remarkable advances in the treatment of childhood cancer in the last decade." Learn more.
• Web-Based Platforms & Survivorship Care: Researchers investigated barriers to follow-up care adherence among childhood cancer survivors and the potential of web-based platforms like Passport for Care to make long-term care more accessible. Learn more.

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Don't Miss Out: 
Exclusive Content Coming Soon for Kids Action Network Members

New in 2018, members of our Kids Action Network (KAN) will begin receiving exclusive content, including quarterly bulletins, an advocacy webinar and more. We invite you to sign up today for your free membership to ensure you don't miss out!

KAN members will be given the tools and tactics to become effective advocates, and the opportunity to make their voices heard to decision-makers in Washington and state capitols. Members will have the chance to join with and lead others in their communities to amplify our shared message and mission.

Our first members-only bulletin will be coming in early March, so now is the perfect time to grab your complimentary membership.

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Donate Your Used Car to Charity

Is your car driving more stress than miles? Donate it to Children's Cause for Cancer Advocacy, and start 2018 off worry-free! Donating your vehicle is easy, and your gift qualifies for a tax deduction. Schedule your free pick-up today: 855-500-RIDE or https://www.childrenscause.org/vehicle-donation/ 

CCCA Presents Rosen Research Award to Harvard's Dr. Kesselheim
Thank You to Our New York Supporters for Another Successful Event!

Thank you to all who supported our annual New York Reception earlier this month. It was a beautiful evening in a beautiful space, and we are so pleased to report that we have surpassed our fundraising goals! We’d like to give special thanks to Genentech, Novartis, and PhRMA for their event sponsorship and to the many dedicated vendors and auction item donors for their generosity. We especially want to recognize event co-chairs Susan and Stephen Scherr and Lynn Bayard, our founder Susan Weiner, and all the event committee members for making this terrific event possible year after year.

Among the event highlights was the presentation of the Leonard M. Rosen Memorial Research Award to Aaron Kesselheim, MD, JD, MPH. 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. His work in the legal and regulatory fields of drug development and approval, as well as insurance coverage and reimbursement practices, informs and supports the policy efforts of Children’s Cause and childhood cancer advocates.

“Prescription drugs can be life-changing treatments for children with cancer, and so we need to make sure that there is adequate support for their discovery and development, that they are rigorously tested in the appropriate populations, and that they are accessible to the patients who need them,” Kesselheim said. “My research in pharmaceutical policy—done in close collaboration with my colleagues at PORTAL and the Division of Pharmacoepidemiology—touches on all of these subjects, and it’s an honor to be recognized by a group like Children’s Cause that is dedicated to supporting these goals.”

The Award honors CCCA chairman and founding member Leonard Rosen and his many years of service on the board of directors. Read more about the Rosen Award and Dr. Kesselheim on our blog.

View photos of the event, courtesy Sarah Merians Photography and Videography, on the Facebook album.

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Children's Healthcare at Risk as Congress Stalls on CHIP Renewal

Funding for the Children's Health Insurance Program (CHIP) expired two months 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 have been left scrambling. Some states - like Virginia - have begun to set 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. According to the Kaiser Family Foundation, eleven states are likely to run out of funds during December if Congress doesn't act fast.

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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Recognizing Parents of Children with Cancer for National Family Caregivers Month

Children's Cause recognized caregivers of children with cancer throughout November on social media, as part of National Family Caregivers Month. We asked parent caregivers to share their advice for families facing a new diagnosis of childhood cancer and received some terrific responses. 

Here's what some of you had to say: 

• "Keeping a good upbeat attitude really does help with healing. Cry it out some days, but then on the next day say to yourself not today. Set realistic goals for the next time your child feels well enough, such as a day at the beach or a movie."
• "Self-care is one of the most loving things you can do for your family. Carve out a small part of the day to meditate, walk outside, color, journal, take a bath, etc. It really is what the flight attendant says: 'Give yourself the oxygen before attending to your children.'"
• Visit our blog for more.

Be sure you're following Children's Cause on Facebook, Twitter and Instagram to join in these community conversations.

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Quick Links: News Round-Up

• A new study finds that adult survivors of childhood cancer are twice as likely as the general population to suffer from high blood pressure. Over 70 percent of childhood cancer survivors over age 50 suffer from hypertension, according to researchers. (Cancer Epidemiology, Biomarkers & Prevention Online, November 22)

• The Food and Drug Administration granted approval of dasatinib for the treatment of pediatric patients with Philadelphia chromosome-positive (Ph+) chronic phase CML. Chronic myeloid leukemia is an aggressive blood cancer that has traditionally had few treatment options. Dasatinib - developed by Bristol-Myers Squibb - was approved through the priority review process and received orphan drug designation. (FDA, November 9)

• ICYMI: 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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Time is Running Out for 2018 Enrollment in Healthcare Marketplace

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

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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Update Your Address Book: CCCA is Moving!

The Children's Cause is moving our Washington office to a new office location, effective December 1st. Please make note of our new address:

Children's Cause for Cancer Advocacy

1325 G. St. NW, Suite 540

Washington, DC 20005

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Year End Giving Opportunities

Did you miss out on making your #GivingTuesday donation on Nov. 28th? There’s still time! You can make your donation at www.childrenscause.org/GivingTuesday, and it will count towards our #GivingTuesday goal. Thanks for your generosity in supporting our mission.

Holiday shopping online? Be sure that you are signed up for AmazonSmile to benefit Children’s Cause! For each purchase made via smile.amazon.com, a donation is given to Children's Cause when you choose us as your charity.

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.