This tab is devoted to current and proposed legislative initiatives that will have an impact on the childhood cancer community. We strongly encourage everyone to write their Representative and/or Senator and voice your opinion on the legislation that affects you and/or our childhood cancer community. Click on any of the legislative bills below that interest you to get all the information you need. Take action by contacting your Representative and speak up for the children. You are their voice. Speak loudly. Speak often.
GOOD NEWS: The Childhood Cancer STAR Act has been fully funded! The DoD CDMRP for children, adolescents, and young adults cancers was also budgeted for 2019! The student loan payments deferment while receiving cancer treatment bill IS now a law! THANK YOU! You and your calls, emails, letters, and tweets made this happen! We are stronger when we collaborate and we are mighty when we speak with one voice! THANK YOU! 9/15/2018
Click on any bill’s name below to get more detailed information.
Congress should incentivize the repurposing of potentially life-saving approved drugs for rare diseases and pediatric cancers. Similar incentives have been critical in the development of new medicines for underserved patient populations and could lead to hundreds of safe, effective and affordable rare disease treatments within the next five years.
The OPEN ACT would establish a six-month marketing exclusivity extension, providing an incentive to a sponsor to repurpose an already approved therapy for a rare disease. The sponsor company would need to demonstrate that the repurposed therapy is safe and effective in treating the rare disease and obtain a rare disease indication from FDA on the drug label. The OPEN ACT is modeled on the highly successful Best Pharmaceuticals for Children Act (2002) that has led to more than 500 labeling changes for pediatric populations.
ChiPACC Act Provides Better Medicaid Coverage to Children in Need. HR. 6560, amends title XIX of the Social Security Act to provide States an option to cover a children’s program of all-inclusive coordinated care (ChiPACC) under the Medicaid program. It requires that the families of all children who qualify for Medicaid receive a specialized care plan covering a range of services – palliative, counseling, respite, expressive therapy and bereavement. This will provide the children and their families greater comfort and peace of mind. The bill allows states to create comprehensive care programs for the children.
The Palliative Care and Hospice Education and Training Act (PCHETA) aims to establish Palliative Care and Hospice Education Centers, provide physician and nurse training in palliative medicine. It provides Palliative Medicine and Hospice Academic and Career Incentive Awards to individuals to support career development, develop a national education and awareness campaign, and to expand national palliative care research programs. The Act was passed by the House on July 23 and the Senate version (S.693) is currently before the Senate HELP committee.
Expressing support for designation of the 17th day in May as “DIPG Awareness Day” to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general. Diffuse intrinsic pontine glioma (DIPG) affects 200 to 400 children in the United States each year with certain regularity;
What may be happening the future. The following bills are in development stages:
The Kids First Research Act 2.0 (H.R. 2008) would redirect approximately $300 million in existing, reserved and unused government funds from the Presidential Election
Campaign Fund to the Gabriella Miller Kids First Pediatric Research Program. Under the direction of the National Institutes of Health, the funds would be used to develop a comprehensive shared-data resource for scientists researching hundreds of different pediatric cancers and structural birth defects and support the development of computational tools to analyze these large, complex genomic and clinical data sets.