July Bulletin: Featuring an NIH Funding Alert and Policy Spotlight on PREA
ALERT: Ask Congress to Fund More Childhood Cancer Research
When Congress returns from their August recess, they will be considering how much funding to provide the National Institutes of Health -- and the National Cancer Institute for 2017. As reported on our blog, a House Appropriations committee recently approved a spending bill that would increase NIH funding by $1.25 billion, while Senate appropriators would increase the NIH budget by $2 billion. We are pleased that both bills include funding for the Precision Medicine Initiative and the Gabriella Miller Kids First Research Initiative.
We are urging advocates to write to their Senators and Representatives and ask them to support the higher Senate number. It is imperative that the NIH and NCI continue to work for new treatments and explore the promise of immunotherapy. While we recognize that Congress faces difficult budget decisions, we also believe that Congress must further prioritize cancer research.
Take action now and tell Congress why each additional research dollar matters for children with cancer.
Then, consider scheduling a district office meeting during this August recess. Face-to-face meetings with your elected officials and their staff in the district office are an extremely effective way to get to know them and express your views on key issues like this one. Our new step-by-step Guide to Congressional District Meetings will help you!
Rosen Research Award Nominations Due August 15th
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. The nomination deadline has been extended to August 15!
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 inaugural Rosen Award will be made at the Children's Cause annual gathering in New York City on November 3, 2016.
The Rosen Award Nomination Form, along with additional details, is now available on our website at www.childrenscause.org/RosenAward. Thank you for sharing and nominating!
Policy Spotlight: Pediatric Research Equity Act (PREA)
Making improvements to two drug development laws - the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) - has been a priority of the Children's Cause and the broader Alliance for Childhood Cancer for many years. On our blog this month, we took a closer look at PREA and how the childhood cancer community has been working together to fix this statute's shortfalls.
What is PREA?
PREA requires pharmaceutical companies who are developing a drug for adult indications to also test the drug in children. Two exceptions to this requirement constrain their impact for children with cancer. First, pediatric studies of a drug can only be required in the same disease for which it is being studied in adults. Since children do not develop lung, breast or prostate cancer, for example, drugs under development for adult cancers do not have to be tested in kids. A second exemption from the PREA requirement applies to any drug being developed for a "rare" disease. Unfortunately, most cancers meet the definition of a rare disease.
These exemptions have resulted in PREA having virtually no effect in stimulating more treatments for childhood cancer. Families and childhood cancer advocates anxious for new treatments have been frustrated with the inadequacy of PREA and have pressed for remedies that stimulate childhood cancer drug development from industry.
A Community Effort
With a legislative opportunity coming up in the next year through a larger must-pass bill, the Children's Cause co-chaired a workgroup of the Alliance and Coalition Against Childhood Cancer (CAC2) that developed a series of policy recommendations to encourage more childhood cancer drug development. These recommendations include changes to the PREA statute.
In anticipation of a new Congress and legislation affecting the FDA, the Children's Cause has begun a broad consensus-building process to solicit additional recommendations and suggestions by stakeholders that will create a bold, effective framework for the creation of new drugs for kids with cancer.
The effort to change the laws that affect pediatric research may be the most challenging and important for our community and will require continued commitment, vision, collaboration and - most importantly - unity.
Recommended Reading: Quick Links
- ACE Kids Act has its day before the House Energy and Commerce Committee: "It was standing room only at the...hearing on the Advancing Care for Exceptional Kids Act. The July 7 hearing on Capitol Hill drew children's hospital executives, parents of children with medical complexity, health care industry experts and policy leaders for a review of a revised discussion draft of the bill that reflected input the committee and bill's cosponsors received from stakeholders..."Read more. (Children's Hospital Association, 7/8/16)
- Endocrine Abnormalities in Aging Childhood Cancer Survivors: Overall, 44% of survivors in this study demonstrated at least one...endocrinopathy. Survivors of [Hodgkin lymphoma] had the highest frequency of an endocrine abnormality (60.1%), followed by survivors of CNS tumors (54%), leukemia (45.6%), sarcoma (41.3%), non-Hogkin lymphoma (39.7%), neuroblastoma (31.9%), Wilms tumors (28.5%), and bone cancer (27.8%). Read more. (Journal of Clinical Oncology, 7/5/16)
- NIH Awards $55 million to build million-person precision medicine study: "The [NIH] announced $55 million in awards in fiscal year 2016 to build the foundational partnerships and infrastructure needed to launch the Cohort Program of President Obama's Precision Medicine Initiative..." Read more. (NIH, 7/6/16)
- Uncle Sam Wants You -- Or at Least Your Genetic Information: "Government scientists are seeking a million volunteers willing to share the innermost secrets of their genes and daily lives as part of an ambitious 10-year research project to understand the causes and cures of disease..." Read more. (New York Times, 7/23/16)
Looking Ahead: Childhood Cancer Awareness Month
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.
Share Your Story: Help us gear up for Childhood Cancer Awareness Month by strengthening our story bank. By sharing your story with us today, you empower us to have a much greater impact this September.Click here to be a voice.
Shopping for Charity through Designs that Donate
Designs that Donate is a premier shopping experience that satisfies every gift giving and personal shopping need, while supporting charitable causes. When you make a purchase from Designs that Donate and designate CCCA as the charity of your choice, they donate 12% of your purchase total to the Children's Cause.
Designs that Donate has just launched a brand-new website to provide an even better shopping experience: Visit designsthatdonate.com.