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CREATING HOPE ACT
CBTF is part of the Alliance for Childhood Cancer. TheAlliance provides a forum of national patient advocacy groups as well as medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.
In March through the Alliance, CBTF participated in a cancer advocacy and rally day on the Hill. CBTF shared personal stories and facts related to a pediatric brain tumor diagnosis with lawmakers and discussed the importance of supporting the newly introduced Creating Hope Act of 2011 (S.606). This legislation is intended to encourage drug development for rare pediatric diseases, including cancer. The bill would allow pharmaceutical companies that develop and obtain FDA approval for a new pediatric rare disease drug to receive a voucher, granting speedier FDA review for any of a company’s other drugs in development. Companies would be entitled to sell the “priority review voucher” to another company, resulting in a potential gain of millions of dollars over its initial investment. The proposal has bipartisan support and offers a new incentive for industry to invest in drug development for small markets. Children with cancer are currently treated with drugs developed for adults in the 1950s, ‘60s, and 70s. The priority review voucher proposal offers a new approach to potentially attracting industry investment.
For the Full Text of the bill: http://thomas.gov/cgi-bin/query/z?c112:S.606: