Out in the Lobby

Millions in the cancer community are working to increase research funding or change policy.
BY ANDREW SMITH
PUBLISHED: JUNE 18, 2015
The group celebrated the law’s passage with a press release that said the act “was the culmination of five years of effort by the Pancreatic Cancer Action Network’s passionate advocates and volunteers—who sent 76,000 emails, made 14,000 calls to Congress and participated in 1,500 meetings.” Groups that focus on particular cancers also try to influence the NCI’s decisions by building relationships with agency staffers—a practice that leads some to believe cancers with weak lobbies get shortchanged.

Jonathan Agin, for example, says the agency spends far too little on pediatric cancer research.

Agin has devoted much of his life to the battle against pediatric cancers since 2008, when his 2-year-old daughter, Alexis, was diagnosed with a diffuse intrinsic pontine glioma. She survived only 33 months.

Agin and his wife created National Race Against the Odds to raise funds for pediatric cancer research, an effort that generated more than $350,000 in its first five years. Agin has also lobbied both Congress and the NIH for research money.

“The NCI’s position is that although it only spends 4 percent of its research budget specifically on pediatric cancer, research into other types of cancer should benefit children who develop such cancers,” Agin says. “But that trickle-down effect really hasn’t happened so far. Childhood cancer is not just adult cancer in a smaller person. It acts differently, often more aggressively, because every muscle, every organ, every system inside a child’s body is undergoing constant growth.”

“It would make more sense,” Agin says, “to develop treatments for children and let them trickle up to adults, an idea that achieved major success in the ’50s and ’60s.”



Making Legislative Change



Agin has made such arguments to countless legislators and bureaucrats, but he believes they have failed to sway the NCI, so these days he devotes most of his energy to other initiatives.

This strategy recently produced a significant victory in a surprising area, the fight against identity theft. Many families that have lost children to cancer — Agin’s among them — have also become victims to thieves who use vacated Social Security numbers for tax fraud. In collaboration with U.S. Representative Sam Johnson, Agin helped pass a bill last year aimed at keeping retired Social Security numbers private by stripping them from federal death lists.


PHOTO BY BRANDON BOGER


One of Blough’s most important jobs is recruiting new volunteers, and one of her best finds is her husband, Brooke, who now coordinates volunteer activities throughout their county.


Agin is currently the general counsel and development liaison for the Children’s Cancer Therapy Development Institute and the director of external affairs for the Max Cure Foundation.

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