A Lifesaving Law
In 2007, a pediatric brain cancer called medulloblastoma transformed Nancy Goodman’s eight-year-old son, Jacob, from a boy passionate about sports and music to a wheelchair-bound patient running out of options. After Goodman, a Washington, DC, lawyer, contacted 36 teams of doctors and researchers across the globe, she realized that their underfunding was so profound, there was no help to be had.
“Jacob died on a Friday night in 2009,” Nancy says. “On Saturday morning, I put my laptop on the dining room table to figure out how to make research more productive for children’s cancers.” That was the start of Kids v Cancer.
The first project grew from the decision that Nancy, 50, had made in her son’s final days to donate his autopsy tumor tissue. Researchers used that precious gift to make significant advances. (One scientist discovered that primary and metastatic tumor tissues are genetically different, which affects treatment.) Nancy learned that many families would like to donate tissue as a “last stand against cancer,” but doctors are reluctant to make such a sensitive suggestion. So Kids v Cancer launched a program that facilitates donations at families’ requests.
At the same time, Nancy knew that massive changes were needed in the landscape of drug development for rare childhood diseases. She enlisted help to draft a bill called the Creating Hope Act, then headed to Capitol Hill for the first time. She visited hundreds of members of Congress and staffers with fellow lobbyists, including Jacob’s friends and his little brother, Ben, now 11. “Ben would talk about losing his brother and what he understood about the need for new drugs. He could make a senator cry,” says Nancy, who also has a daughter, Sarah, three. After the bill secured 172 cosponsors, it passed into law on July 9, 2012.
Under the law, if the FDA approves a company’s drug for pediatric cancer or other diseases, that company receives a priority review voucher (Nancy calls it a golden ticket) that can be applied to any other medication—such as a lucrative adult drug—to get it reviewed faster by the FDA. “We’ve given companies a way to do well by doing good,” Nancy says.
To make a donation or to help write to members of Congress about pediatric cancer, visit kidsvcancer.org.
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