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A local breast cancer activist has been busy lately on the national front, attending two high-level seminars that will set the direction for the future of breast cancer research in the United States.
Connie Rufenbarger, Country Club Drive, was one of 15 patient advocates to attend a National Cancer Institute seminar Sept. 14-16 in Baltimore, Md. Other participants included approximately 250 scientists, clinicians, surgeons, biologists, oncologists, etc.
One purpose of the NCI meeting, Rufenbarger said, was to get cancer researchers of different disciplines together to share information and discuss all aspects of breast cancer, from early detection to treatment, from biological control to genetics and prevention.
"Only at seminars like this do scientists of different disciplines discuss things," she said. "People who study bones don't necessarily meet with molecular scientists on a regular basis.
"This is a difficult time in cancer. I wanted to hear that we were closer to a cure. But at least we now know the right questions to ask."
The NCI conference was intense, with sessions beginning at 7:30 a.m. daily and running through the evening, when the attendees broke into smaller teams to prepare and write reports for the next day.
As a patient advocate, Rufenbarger said she was fascinated by the people at the seminar as well as by the process.
"The patient, the consumer, had an equal place at the table," she said. "And how often do you get to be in a room and listen to the conversation between Nobel laureates?"
An encouraging aspect of the information sharing, she said, is that the breast cancer research is translational - what is learned about breast cancer also can be applied to other hormonal cancers, such as ovarian or prostate cancer.
Then, at the end of this month, Rufenbarger is off to Washington, D.C., for the "Department of Defense Breast Cancer Research Program: An Era of Hope."
Again attending as a breast cancer patient and survivor and as a consumer, Rufenbarger also will co-chair a committee on diagnostic imaging and one on drug resistance.
The DOD has financed breast cancer research grants since 1992, she said, and this year Congress appropriated $135 million for research.
"They've always done superb medical research in DOD, they have a huge number of participants in their trials, their medical care is free and the army makes its own rules," she said. "Their philosophy is that the military is to respond to emergencies, to the needs of the people of this country, quickly. So why not the war on breast cancer?"
She said the DOD seminar, which will include approximately 2,500 people, including 20-25 consumers, is exciting because of the opportunities it presents to young scientists and students.
"They can send students to hear cutting edge discoveries, research that's brand new, hot off the presses. There's never really been anything like it," she said.
It's also exciting because the results of research funded by the DOD are being made public for the first time.
"This is the first year they've ever brought everybody together to report on it," she said. "It helps professionals understand the consumers' side, what patients go through. This really puts a face with it.
"When you bring the consumer to the table, what is said at the table will be brought back to other consumers. It's public money, people should know where it's going, should know what's being funded, how much, who gets it, etc. ... Our tax dollars do not belong to the Pentagon. They're ours."
Rufenbarger said she was chosen for the seminars because of her visibility in the National Breast Cancer Coalition and because she was a founder of the Indiana Breast Cancer Coalition.
Before the DOD seminar she's busy studying the topics, issues, future goals, science and technology. "When you're lucky enough to get to be the one who gets to go sit in that chair - boy, you want to do a good job."
Then there's Saturday's concert and benefit auction, of which she is the chairwoman, that will raise money for breast cancer research in Indiana. The event will benefit the Catherine Peachey Fund Inc., which provides grants for start-up research that allows scientists to collect the data they need for larger, national grants.
The Peachey Fund already has financed thousands of dollars in grants to Hoosier doctors and scientists, and pays the salary of a molecular biologist from Japan who brings a new perspective to several areas.
Rufenbarger shrugs off the question of how hard she works on behalf of breast cancer research, at both the state and national levels.
"As much as it is an honor to go to these conferences, I take with me all the women I've known who died and who've been diagnosed - we take all of them to the table with us. All those other consumers there are women who've had treatment and it wasn't much fun. We all want to know how you find it early, how you prevent it and how you cure it."
