Patents don’t work for pediatric cancer drugs, so we create new incentives

Pediatric Vouchers — RACE for Children Act — Give Kids a Chance Act — Expanded Access — Expanded Eligibility

Almost Law

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, with tweets by Elon Musk, the funding bill fell apart. What Congress ultimately passed 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 fine companies that fail to complete required pediatric 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 118th Congress, the Senate took up our bills. Senator Rand Paul objected. The vote failed.

There was one small victory. Congress funded the Gabriella Miller Kids First Research Program.

But we have gone backwards.

Now, in this 119th Congress, there are no effective incentives to create new curative treatments for children with cancer.