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.
Click on any bill’s name below to get more detailed information.
H.R. 820 and S. 292: The Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR) – The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options. The STAR Act has passed in the Senate and the House of Representatives. On June 5, 2018 It was signed into law. What should you do now?
What happens now? The Senate has included funding in it’s Appropriations Bill, now we need the House to do the same. Click Here to help.
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.
S. 3207 Deferment for Active Cancer Treatment Act is a commonsense solution that provides adolescents and young adults with a small amount of financial relief while they take time off from work or school typically without pay to receive cancer care, adding to the 11.2% national delinquency rate on student loans.
Once treatment is over, these young Americans can get back on their feet faster; returning to work or school with the expectation of being a contributing member of society. The Deferment for Active Cancer Treatment Act will enable individuals who are diagnosed with cancer to defer payments on public student loans while actively receiving treatment without interest accruing during the deferment period. This bill does not seek to change the terms of the public loan agreement between lender and borrower beyond placing a pause in repayments while cancer treatment is underway.
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.