Out in the Lobby

Millions in the cancer community are working to increase research funding or change policy.
These unpaid armies once lobbied independently and sometimes undermined each other, either by contributing to competition for funding between different cancer communities or simply by making inconsistent requests. Today, 48 of the largest cancer advocacy groups concentrate most of their lobbying efforts under a single banner, One Voice Against Cancer (OVAC), which combines resources to fight for common goals.

“In areas that are budget-driven, we’re treading water. We’ve held our own during the years of sequester, and we’re looking to build on that going forward,” says Dick Woodruff, vice president of federal relations at ACS CAN, which, in turn, manages day-today operations at OVAC. “But there are still plenty of opportunities on the legislative front, even when money is tight. At the state and local levels, we’ve had some success in raising tobacco taxes, and those higher prices will reduce the number of teenagers who take up smoking.

“At the federal level, we got a bill passed that directs the FDA to expedite the approval of sunscreens that have been available in Europe for years,” Woodruff continues. “This may sound like a minor victory, but 13,000 people die of melanoma each year, almost entirely because of sun exposure, and these sunscreens work much better than older ones.”


George Ann Blough, second from left, gathers with fellow advocates in Washington, D.C.

Funding Cancer Research

Last year, the research budget of the National Cancer Institute (NCI) was just under $5 billion. On paper, excluding two special supplements, the agency’s budget has held relatively steady in recent years, which means it hasn’t kept pace with inflation. Stated in constant 1999 dollars, NCI expenditures have fallen from a peak of around $4 billion in 2003 to roughly $3 billion today.

OVAC members hope the strengthening economy and the bipartisan support for medical research will allow them to turn the tide this year. The group is asking Congress to increase the NCI’s budget by 6.9 percent.

Advocates for cancer patients would naturally like more, particularly given the widespread perception that genetic targeting and immunotherapy are ready to bear incredible fruit, but money is still tight, and lobbyists deal in the art of the possible.

As always, the OVAC request says nothing about how much should go to each cancer. Groups that wish to join the cooperative must agree to work together on maximizing the total research budget and letting the NCI choose the most productive uses for it.

Still, organizations that belong to OVAC have been known to lobby Congress for direct earmarks when they see opportunity. The Recalcitrant Cancer Research Act targets all cancers that kill more than half of their victims within five years, including lung cancer, but the Pancreatic Cancer Action Network pushed it through Congress, so it focuses largely on issues important to the pancreatic cancer community, and led to the NCI, in 2013, laying out recommendations for action on four new pancreatic cancer research initiatives.

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