ADVOCACY – Take Action

Drug Shortages:

In the fall of 2019, a shortage of the chemotherapy drug vincristine alarmed the childhood cancer community and spurred us into action. CAC2 held a special community webinar to disseminate accurate information about the shortage, which you can view here. CAC2 continues to work with our partners in the community and on Capitol Hill to navigate the complex issue of drug shortages and seek solutions.

Based on guidance from our Hill Champions, we are working with our partners to ensure the most effective advocacy effort, including supporting the MEDS Act (S. 2723, co-sponsored by Senators Susan Collins and Tina Smith). We will share steps to support developing legislative solutions as they emerge.

Drug Development:

In September 2019, legislation was introduced that would permanently reauthorize the Creating Hope Act. The Creating Hope Act creates an incentive for companies to develop drugs for pediatric rare diseases: a pediatric priority review voucher. Vouchers are fully transferable. Exercise of a voucher entitles a company to faster FDA review of any other future drug, including non-pediatric rare disease drugs.

Take action by reaching out to your Representative to ask for their support of this legislation.

DIPG Awareness:

The DIPG Awareness Resolution raises awareness to the deadly statistics of DIPG, brain cancer, and pediatric cancer in general, and asks that pediatric and high-mortality rate cancers receive greater consideration for research grants with both government and private resources.

You can help by asking your Members of Congress to support an effort to designate May 17th as DIPG Awareness Day.

Gabriella Miller Kids First Research Act 2.0:

The first Gabriella Miller Kids First Research Act passed in 2014 and set up what has been a very successful program funded by non-taxpayer monies that fosters collaborative research to uncover the genetic etiology of childhood cancer and structural birth defects.

Gabriella Miller Kids First 2.0:

  • continues the established program that has already developed a comprehensive shared-data resource for scientists researching the majority of pediatric cancers and structural birth defects and that supports development of computational tools to analyze these very large, complex genomic and clinical data sets, and
  • has identified a funding source that a redirects the penalties levied against pharmaceutical manufacturers by the U.S. Security and Exchange Commission (SEC) for violating the Foreign Corrupt Practices Act (FCPA).

 

You can read more about the bill here and discover how you can take action to support its passage:  Gabriella Miller Kids First 2.0.