November 2017: Rosen Award, CHIP update & more...
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CCCA Presents Rosen Research Award to Harvard's Dr. Kesselheim
Thank You to Our New York Supporters for Another Successful Event!

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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.


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

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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.


Recognizing Parents of Children with Cancer for National Family Caregivers Month

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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 FacebookTwitter and Instagram to join in these community conversations.


Quick Links: News Round-Up

  • 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 Portalan easy-to-navigate resource guide for childhood cancer families with a robust list of organizations that provide support and assistance.

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


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. NWSuite 540

Washington, DC 20005


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.

Jessica Kean
October 2017: CHIP Remains Stalled in Congress
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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.

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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.


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
 


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 Portalan easy-to-navigate resource guide for childhood cancer families with a robust list of organizations that provide support and assistance.

This Week: Our Signature Event of the Year!

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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.

Jessica Kean
September 2017: Congress Set to Miss CHIP Renewal Deadline

Congress Set to Miss Saturday CHIP Renewal Deadline

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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 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.


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