09/28/2012 02:41 pm ET Updated Nov 27, 2012

The Politics of Cancer

NCI Director Varmus Tearing Down the Walls

My sister Laura Ann died of pancreatic cancer six months ago at age 50. She had been a longtime editor at McGraw Hill, an old-movie buff (Judy Garland) and Washingtonian. Her diagnosis was 15 years ago and her life greatly extended by Whipple surgery which removed the head of her pancreas, parts of several organs and the cancer. However, she suffered nerve pain from the surgery itself, which basically cuts an S-Curve down the abdomen. Success rates are high, says the USC center for pancreatic cancer, with mortality at less than 4 percent.

Pancreatic cancer is one of the deadliest cancers, killing more than 95 percent of people diagnosed with it, usually within six months of diagnosis. If pancreatic cancer is found early, surgical removal may cure it. But only 15 to 20 percent of pancreatic cancers are found in the early stages of the disease like Laura's. Patrick Swayze had only five weeks to live when diagnosed.

Patients who have Whipple surgery can expect to live on average about five more years. Laura had over 15 more years with us. Yet no substantive curative breakthroughs have happened in 40 years since Allan Whipple decided to surgically cut it out.

Dr. Harold Varmus, Nobel laureate, spoke against specific legislation aimed at pancreatic research at the National Press Club this week. He talked about "What Impedes Cancer Research" including NCI budgets of $5 billion staying static; but does not agree specific cancers should be funded legislatively.

Dr. Varmus, director of the National Cancer Institute (NCI), said while cancer research budgets remain flat, genomics are moving NCI closer to cures. While specific cancers differ, legislative preference for funding specific cancers is a slippery slope. He addressed the Pancreatic Cancer Research and Education Act passed by the House, which might redirect funding from NIH/NCI or earmark it for that specific cancer.

He said the bill was changed and now is about recalcitrant cancers.

"The directives in the bill would not enable us to do something we would not ordinarily do," said Dr. Varmus:

We are scanning the horizon to make sure everything is probed. I would object to part of the original bill which is to take decisions about grant-making out of the hands of the NCI and putting it in the hands of advocacy groups.

Not just because it is inherently wrong, but because very quickly every advocacy group would say, "I want that too," and pretty soon you have chaos.

Overall cancer death rates have decreased since the 1990s at an average of over one percent per year; for children, cancer death rates have been in decline since the 1970s. Still, cancer remains a leading cause of death in the U.S. and the world; in this year alone, more than 1.5 million in the U.S. will be diagnosed with cancer, and more than half a million will die from it.

"Buying power has fallen 20 percent back to 2001 levels while success rates for NIH grant applicants has fallen to an all time low," said Dr. Varmus. Researchers at NCI have 14 percent of funding success from what was once 30 percent funding, he added. He said issues that impede progress on cancer are financial, technical, regulatory and cultural. And most of the $5 billion is already spoken for.

Varmus is the author of The Art and Politics of Science, a no-holds-barred look at how and why science fares badly inside the Beltway. He was on the Obama administration transition team for health and science. At the time of his appointment as NCI director, he co-chaired the President's Committee of Advisors on Science and Technology.

Dr. Varmus tried to remain apolitical in our discussion, yet laments that only Rick Santorum addressed health research during the campaign. It's just not part of the discussion -- not because cancer ought to be in our political discourse. But, perhaps because cancer is too "political" to touch.

Watch the Press Club talk and my interview of Dr. Varmus on C-SPAN here.

Mike Smith was the moderator and an organizer of this event.