This is the first move by Congress to confront the dire supply of drugs for pediatric cancers, as well as other devastating childhood diseases. The FDA has only approved one childhood cancer drug in the last 20 years, compared to 50 drugs for adults.
The National Cancer Institute allots only 4 percent of its budget for childhood cancers, and funding for other pediatric diseases is just as scarce.
“This act will hopefully lead to new and innovative treatments for children with cancer by offering incentives and priority review vouchers to companies or institutions that develop drugs for rare pediatric diseases,” explains Angie Hayes, Case Manager at The National Children’s Cancer Society (NCCS), who also participated in lobbying efforts for the bill’s passage.
The Creating Hope Act will expand the priority review voucher program as incentive for pharmaceutical companies to formulate more pediatric drugs. Essentially, companies can expedite the FDA’s review of more profitable drugs if they also develop treatments for pediatric cancers and other rare diseases.
Although cancer drugs for children might not make much money, they are desperately needed. It’s estimated that 35 children are diagnosed with cancer each day in the U.S. Because most treatments are intended for adults, they can be harsh on children and may result in life-altering consequences. Three out of every five children who survive must cope with potentially life-threatening side effects of treatment.
Since childhood cancer survivors face an uphill battle even after overcoming cancer, NCCS created Beyond the Cure — a survivorship program for childhood cancer survivors and their families. Beyond the Cure offers a web-based information center including a proprietary late-effects assessment tool, conducts educational web conferences, awards college scholarships to childhood cancer survivors and includes up-to-date listings for additional resources.
Learn more about the issues facing many childhood cancer survivors at www.beyondthecure.org.