Three hours before a scheduled vote in Congress, to the surprise of the country, the funding bills for childhood cancer fell apart. (December 2024)

We have gone backwards.

There were five pieces of legislation that had gained a lot of support across both the House and the Senate over the past two years thanks to the collective efforts of the childhood cancer community and our legislative champions. While passage of the Gabriella Miller Kids First Research Act to extend funding for critical pediatric cancer research was a positive step forward, Lawmakers cut the remaining critical bipartisan policies from the spending package that would have benefited childhood cancer patients and their families.

A summary of the Bills is as follows:

1. ACCELERATING ACCESS TO CARE ACT: Now, kids on Medicaid with cancer who need out of state treatment may not be able to get it.

2. GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0:The only Bill that passed. It extends research funding authorization for another seven years.

3.GIVE KIDS A CHANCE ACT: Supports pediatric studies on new cancer drug combinations. This  Act, which had 235 House cosponsors, had gone through two House hearings, a markup and a House floor vote, is no more. Now, there’s no opportunity for companies to do studies of cocktails of new cancer drugs for kids.

4.INNOVATIONS IN PEDIATRIC DRUGS ACT: Imposes financial penalties on drug companies that fail to complete required pediatric studies.

5. PRIORITY REVIEW VOUCHER PROGRAM (Creating Hope Act): It was supposed to extend through 2029. The pediatric priority review voucher program has expired for the first time in 12 years. Now, there is no incentive for companies to develop drugs expressly for kids with cancer and other life threatening illnesses.

January is a new Congress and we will start all over.

Our community worked very hard to on a final push to ensure Congress would adopt these policy priorities before adjourning for the year.  There was a lot of political drama last week, and we are deeply disappointed that many of our top federal priorities didn’t make it across the finish line this session.