November 2017: Rosen Award, CHIP update & more...
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.
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.
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.
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.
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
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.