Pediatric Cancer Bills Cut from Federal Budget
December 26, 2024
We were elated on December 17th when Congress included our pediatric cancer drug development bills, the Creating Hope Reauthorization Act reauthorization of the pediatric priority review voucher program and the Give Kids a Chance Act, in the federal end-of-year funding bill. We were so close to victory.
But three hours before a scheduled vote, to the surprise of the country, the funding bill fell apart. What Congress ultimately passed into law was a stripped down bill from which the pediatric priority review voucher program and the Give Kids a Chance Act had been dropped. Other critical pediatric cancer bills had been stripped as well including Accelerating Kids Access to Drugs Act, a bill to ensure kids with cancer on Medicaid can cross state lines for treatment and Innovation in Pediatric Drugs Act, a bill to impose on companies that fail to complete required pediatric studies the same penalties they would receive if they failed to complete required adult studies.
We went into action. Social media stories blew up the internet. We were covered by CNN, ABC, MSNBC, STATNews, Newsweek, Rolling Stones, The Bulkward.
We had one more chance. At 11:50 pm on December 20th, the last hour of the last day of this Congress, the Senate took up our bills. Senator Rand Paul objected. The vote failed.
We have gone backwards.
Today, the pediatric priority review voucher program has expired for the first time in 12 years. Now, after yielding 65 new drugs for kids, there is no incentive for companies to develop drugs expressly for kids with cancer and other life threatening illnesses.
The Give Kids a Chance Act, which had 235 House cosponsors and had been passed unanimously by the House in 2022 and again 2024, is no more. Now, there’s no opportunity for companies to do studies of cocktails of new cancer drugs for kids.
And now, kids on Medicaid with cancer who need out of state treatment may not be able to get it.
There was one small victory. At the last moment Congress did fund the Gabriella Miller Kids First Research Program 2.0 for $63 million over five years.
But altogether, children with cancer have been left behind. Now, in this 119th Congress, there are no regulatory incentives or mandates to create new curative cancer treatments for children with cancer, and children on Medicaid may not be able access cancer treatments across state lines.
January is a new Congress and we will start all over.
Let us join together to get these pediatric cancer bills passed into law as quickly as possible.
Our Impact
2011
2012
2015
2016
2017
2020
2022
2024
Post mortem pediatric brain tumor tissue donation pilot program
Creating Hope Act Pediatric Priority Review Voucher (PRV) becomes US law
Compassionate use patient navigator pilot program
PRV reauthorized
RACE for Children Act becomes US law
PRV reauthorized
Give Kids a Chance Act passes in the House of Representatives
Give Kids a Chance Act, including PRV reauthorization, passes in the House of Representatives.
Our Ask
2025
Give Kids a Chance Act is included in March federal funding bill and is passed into law. Creating Hope Reauthorization Act PRV is reauthorized as part of the March funding bill and passed into law. The PRV program’s expiration ends.
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Evie’s sister, Sadie Murata
Ella Bresee, in Pink
Caroline Belcher
Wake Up To Politics: September 27, 2024 - Two People Who Inspire Me
Federal Register: September 19, 2024 — FDA Sets New Priority Review User Fee Rate for FY 2025: $2,482,446
STAT News: September 12, 2024 — A rare disease program, portrayed as both lifeline and pharma handout, is set to expire
September 21, 2024 — Climb the Hill Day
Nature Medicine, April 2022 — How to Correct the Market for Children’s Cancer Drugs, by Nancy Goodman
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