June Bulletin: Rosen Award, Hill Briefing, Policy Updates & More

Now Accepting Nominations for the Rosen Award

The Children's Cause for Cancer Advocacy is pleased to announce the Leonard M. Rosen Memorial Research Award of $10,000, to be granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy.
Relevant work should be related to advancing treatment and care for children, adolescents, and young adults and their families. Examples of areas of work include outcomes research, healthcare quality, delivery and cost, economics of drug development, and improved access to therapeutic agents. The award recognizes the importance of the unique challenges associated with the care and treatment of children with cancer that may not be associated with the treatment and care for adults with cancer. 
Individuals who are engaged in projects in the broad fields of childhood cancer policy and/or advocacy are encouraged to apply or be nominated by colleagues or mentors. Applicants are asked to submit a detailed Curriculum Vitae, including publications, a two-page statement of how the Rosen Award will be used to advance policy and advocacy, and two references.
The deadline for submission of applications in August 1, 2016.The inaugural Rosen Award will be made at the Children's Cause annual gathering in New York City in late October 2016.
The Rosen Award Nomination Form is now available at www.childrenscause.org/RosenAward. Thank you for sharing and nominating!

CCCA Capitol Hill Briefing Highlights Survivorship Issues

Briefing speakers (l-r): Dr. Smita Bhatia (Univ. of Alabama), Stacie Ritter, Madeline & Hannah Ritter, Dr. Anne Reilly (CHOP), Dr. Monica Gramatges (Texas Children's), Dr. Julie Wolfson (Univ. of Alabama)

Briefing speakers (l-r): Dr. Smita Bhatia (Univ. of Alabama), Stacie Ritter, Madeline & Hannah Ritter, Dr. Anne Reilly (CHOP), Dr. Monica Gramatges (Texas Children's), Dr. Julie Wolfson (Univ. of Alabama)

Children's Cause hosted a Congressional briefing this month that featured pediatric oncology experts sharing critical information about the unique needs and challenges faced by childhood cancer survivors over the short- and long-term. The event was attended by Congressional staff, as well as representatives from advocacy organizations and the National Institutes of Health. We thank the great line-up of speakers for sharing their time and expertise.
The presenters offered compelling evidence regarding the long-term medical and emotional impact faced by childhood cancer survivors, as well as the medical, geographic and financial challenges in accessing the care that is required throughout childhood and adulthood.
The Children's Cause is committed to ongoing efforts like these Hill briefings to raise awareness among Congressional and federal policymakers about the experiences and vulnerabilities faced by childhood cancer survivors throughout their lives. 
All of us at the Children's Cause send briefing speakers Madeline & Hannah Ritter our thanks and our congratulations: the twins graduated high school earlier this month! They'll begin their college careers this fall at Arcadia University. Read more about their survivorship journey on our website: Madeline & Hannah's Story.

Pediatric Cancer Policy Updates

Oncology Center of Excellence at the FDA:

The Children's Cause for Cancer Advocacy recently weighed in on the proposed establishment of a new Oncology Center of Excellence at the FDA, part of an agency-wide reorganization effort. In our letter to FDA Commissioner Califf, we gave our support for establishing such a center that is capable of reviewing cancer diagnostics, drugs and biologics for children with cancer. A PDF of our letter is available here.

In breaking news, the FDA's Dr. Richard Pazdur (bio) has been selected to serve as acting director of this new Oncology Center of Excellence. We offer our congratulations to Dr. Pazdur and extend our thanks to Commissioner Califf for continuing to advance this initiative.

Ask Congress to Support the ACE Kids Act:

The Children's Cause for Cancer Advocacy is proud to be supporting the Advancing Care for Exceptional (ACE) Kids Act (H.R.546/S.298), which would improve care for approximately two million children with medical complexities in the Medicaid program. The bill would provide more consistency for children with medical complexity as they often need to travel across state lines for care, which currently results in coverage issues since Medicaid coverage may differ from state to state. We are honored to join the nation’s leading children’s hospitals, along with the Children’s Hospital Association, to support this legislation. TAKE ACTION.

FDA Offers Guidance on Expanded Access to Investigational Drugs

The Food & Drug Administration recently released several documents intended to help patients and physicians navigate the process of accessing investigational drugs.  Also called “compassionate use,” the FDA move attempts to streamline the process by which patients – who may have limited treatment options – can secure drugs that are still being tested and not otherwise available outside a clinical trial.

Access to unapproved therapies requires cooperation between the FDA, the company developing the product and the patient’s health care professional.   For its part, FDA released a new form that physicians must complete as part of the process for requesting access to unapproved treatments for their patients.   The new form is estimated to take 45 minutes to complete, instead of the hours the previous form required.  Instructions for completing the updated form along with a question and answer document and guidance for the pharmaceutical industry on how they might charge for access to these therapies were also released by the FDA.

Research Highlights from ASCO

The American Society of Clinical Oncology (ASCO) held its annual meeting earlier this month in Chicago. Children's Cause was glad to attend this year's meeting, which brings together oncology professionals, organizations and other stakeholders. Here are just a few of the many research highlights out of this year's meeting that relate to childhood cancer survivorship:

  • Childhood Cancer Survivors Less Likely to Receive HPV Vaccine: A new study finds that 42% of 13-17 year olds in the general population have received the HPV vaccine, compared to just 22% of childhood cancer survivors in the same age bracket. This is troubling because those with compromised immune systems - including survivors of childhood cancer - are more susceptible to HPV and its complications if infected. (James Klosky, et. al, Abstract #10573

    • 1 in 4 Adult Survivors of Pediatric CNS Tumors Unable to Function Independently: This study analyzed the functional independence of more than 300 adult survivors of pediatric central nervous system tumors such as astrocytomas and medulloblastomas. Researchers looked at the survivors' employment status, marital status, driving ability, independent living status, and ability to manage their own personal care and routine needs. Forty percent were classified as independent, while 34% were deemed moderately independent and 26% were non-independent. Non-independent survivors reported worse physical and emotional quality of life. (Tara Brinkman, et. al, Abtract #10524)
    • Parents Report Feeling Under-Prepared for Late Effects & Survivorship: Parents of childhood cancer survivors reported feeling extremely or very well prepared for their child's treatment and daily care needs but feeling less prepared for future limitations their children may experience and for life after cancer in general. Parents reported feeling more confident when oncologists and providers helped prepare them for life after therapy. (Kate Greenzang, et. al, Abract #85)

Also at ASCO, Vice President Joe Biden was on hand to deliver remarks about the president's Moonshot Initiative. "Today, oncologists and cancer researchers realize that they can't [advance cancer progress] alone... What's required today extends beyond any individual or any individual discipline, beyond medicine itself... It requires somewhat of a change in mindset. It requires a lot more openness - open data, open collaboration and above all, open minds," he said. For video of the Vice President's speech, visit ASCO's Virtual Meeting Portal

Conference for Neuroblastoma Survivors: July 14-17

The Children's Neuroblastoma Cancer Foundation is holding a conference for Adolescent and Young Adult (ages 14-22) survivors of high-risk neuroblastoma, July 14-17 in Lombard, Illinois. The event will cover common issues facing these survivors including assuming responsibility for healthcare, transitioning to college, infertility, peer relationships and other psycho-social concerns. Space is still available -- email Jen Click at jsclick@gmail.com for more details and to register.

The AYA event is part of CNCF's 13th Annual Parent and Caregiver Education Conference, which brings together parents, caregivers, and neuroblastoma researchers to share information and learn about new treatment options and current research.

Save the Date for CureFest 2016: September 17-18

This year's CureFest on the National Mall will take place the weekend of September 17th. CureFest is a national festival held in Washington, D.C. during Childhood Cancer Awareness Month, bringing thousands of childhood cancer advocates and supporters together with the general public and tourists to raise awareness about pediatric cancer.

The event features informational booths, games and activities, live entertainment, and an awareness walk. For the first time this year, all events associated with CureFest are free of charge, although participants are still asked to register in advance

Jessica Kean