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 Senators 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 legislators 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.
This bill amends the Federal Food, Drug, and Cosmetic Act to make permanent the authority of the Secretary of Health and Human Services to issue priority review vouchers to encourage treatments for rare pediatric diseases. The Creating Hope Act pediatric priority review voucher program has been wildly successful. Since the passage of the Creating Hope Act, the FDA has approved 19 new therapies for children with serious illnesses, two of which are for children with cancer. The Creating Hope Act sunsets on September 30, 2020. It is critical that Congress reauthorize the program permanently so that children with serious illnesses can have hope for new therapies, better health and even possibly cures. We must work with Congress to get the program permanently reauthorized.
The Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical manufacturers by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First Pediatric Research Program (Kids First) at the National Institutes of Health (NIH). There have been consistent and large civil sanctions leveraged against pharmaceutical companies since 2013 – hundreds of millions from six violations. With this legislation, penalties from pharmaceutical companies that break the law would be channeled directly to critical medical research.
A Senate Bill to improve on critical drug shortages, such as vincristine and others, The MEDS Act builds upon the prior work of Congress to provide additional authority to the FDA to help mitigate drug shortages and develop market-based incentives to help ensure a stable supply of medications critical for patient care.
The Act is intended to ensure that a fair percentage of Federal cancer research funds are dedicated to pediatric cancer research. It requires that the percentage of Federal Research dollars obligated for pediatric cancer research (individuals under age 18) be equal to the percentage of total population of persons under age 18 years that reside in the United States compared to total population in United States as determined by the Bureau of the Census.
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.
The CLINICAL TREATMENT Act HR 913 amends title XIX of the Social Security Act to promote access to life-saving therapies for Medicaid enrollees by ensuring coverage of routine patient costs for items and services furnished in connection with participation in qualifying clinical trials, and for other purposes. Read Text
In September 2018, the World Health Organization announced the Global Initiative for Childhood Cancer that aims to reach at least a 60% survival rate for children with cancer by 2030. The Global Hope Act will support this mission and lower the childhood cancer mortality rate in developing countries.
GOOD NEWS: Look at what the childhood cancer community has been able to get done! The Childhood Cancer STAR Act has been fully funded! The DoD CDMRP for children, adolescents, and young adults cancers was also budgeted for 2020! 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! 9/15/2019
Author: Joe Baber