July 3, 2012

This is the saddest story you will ever read about how a bill becomes law. It should also make you feel better about our dysfunctional political system.The story begins on a Sunday in February 2007, when a doctor suggested that Jacob Froman, then 8, had brain cancer. An MRI on Monday confirmed the grim diagnosis: metastatic medulloblastoma. Jacob was in surgery at 7 the next morning.“And then,” says his mother, Nancy Goodman, “he was never the same.”After the surgery came radiation and chemotherapy. But within two weeks, it became clear the treatment wasn’t likely to work. Jacob’s doctors stuck with it — because there weren’t other options.When she embarked on a quest to save her son, Goodman, an international trade lawyer with degrees from Harvard (public policy) and Chicago (law), discovered that in the past 30 years there have been no major changes in treating medulloblastoma, which primarily affects children.Only one pediatric cancer drug has won initial approval from the Food and Drug Administration in 20 years. The National Cancer Institute allocates 4 percent of its budget to pediatric research. Children account for far less than 4 percent of cancer cases but, then again, cancer wreaks particular devastation on a child.Ordeal is too mild a word to describe what Jacob and his family endured. He spent nine of his remaining 23 months in the hospital. Jacob died at age 10 on Jan. 16, 2009.

The next morning, “I put my laptop on the dining room table and started working,” Goodman says of the organization she launched, Kids v Cancer. “I was alive and Jacob wasn’t.”

The battle against childhood cancer is sometimes framed as a success story. Five-year survival rates from acute lymphoblastic leukemia, which accounts for three in four cases of pediatric cancer, are now 90 percent — up from 10 percent in the 1960s.

But those encouraging numbers obscure painful truths: That surviving for five years means something different at 8 than at 58. That the after-effects of treatment for children can be terrible. And, most pertinent, that the economics of pharmaceutical research disfavor new treatments. The small number affected, combined with the risk of pumping toxic chemicals into tiny bodies, discourages investment. Children with cancer are mostly relegated to “hand-me-down” drugs for adult cancers.

Kids v Cancer aims to transform that bleak landscape. One approach Goodman quickly identified was to copy an existing voucher program designed to encourage research into neglected tropical diseases.

The concept behind what came to be known as the Creating Hope Act was to dangle a fat carrot: Companies that obtained FDA approval for new pediatric cancer drugs would also receive vouchers guaranteeing speedier review of other, potentially more blockbuster drugs. This valuable commodity, possibly worth millions, could be sold. Manufacturers would pay fees for the faster review.

Goodman isn’t exactly a political naif. Her husband, Michael Froman, is an assistant to President Obama, his law school classmate. But this is not a tale of Washington connections.

Goodman cold-called a staffer for Sen. Sherrod Brown, an Ohio Democrat who had worked on the tropical disease bill, and made her pitch.

Goodman found an unlikely pairing for the liberal Brown in Kansas Republican Sen. Sam Brownback. And when the bill did not become law in 2010, Goodman found another conservative Republican, Texas Rep. Michael McCaul, to carry the torch the next year, along with North Carolina Democrat G.K. Butterfield.

Goodman and assistant Adrienne Westcott, a 24-year-old leukemia survivor, found staffers uniformly willing to hear them out. They enlisted compelling lobbyists: Jacob’s younger brother Ben, Jacob’s school friends. Brianna Commerford, a 13-year-old survivor of Hodgkin’s lymphoma, recruited House Minority Leader Nancy Pelosi (D-Calif.) and Rep. Ron Paul (R-Tex.) as co-sponsors in a single day.

Despite the heart-tugging subject, the measure was an uphill climb. The FDA wasn’t thrilled about being told what drugs to prioritize. Some lawmakers worried that the pharmaceutical industry would take the vouchers without producing. The most likely vehicle for getting the measure passed was the FDA reform bill, but there was pressure to limit amendments.

But when the FDA bill was finally passed last week, the Creating Hope Act remained in.

“She did an amazing thing,” recalled Ellie Dehoney, the former Brown staffer. “It was a real long shot and she just met with people and met with people and met with people.”

Other grieving parents have turned tragedy into legislation: Megan’s Law, Amber Alerts. But in our partisan, gridlocked, money-drenched politics, Jacob’s story stands out, almost as gratifying as it is sad.