Members of the National Breast Cancer Coalition were determined--and just a little defiant--Monday when they entered the White House to hand over a stack of dogeared and crumpled papers bearing 2.6 million signatures collected from every corner of the nation.
The petitions urged President Clinton to find a cure for breast cancer by creating a "national comprehensive strategy."
But what these women really mean is that they are tired of being told to do regular breast self-exams and mammograms and to watch their diets.
What they want, they say, is more research on what is causing one in nine American women to develop breast cancer over a lifetime, among the highest rates in the world.
They suspect something in the environment may be responsible for this "epidemic." And they want researchers to start looking at landfills, toxic dumps and electromagnetic fields--places where breast-cancer researchers have yet to venture.
Clinton received the petitions warmly, acknowledging that there is much to learn about breast cancer and adding: "When it comes to health-care research and delivery, women can no longer be treated as second-class citizens."
"No one has found out what causes breast cancer," said Jane Alsobrook, an activist with the Los Angeles Breast Cancer Alliance. She and 200 others participated in a breast-cancer rally held on a recent Sunday afternoon at the Federal Building in Westwood. "People keep looking at the link to hormones and the diet. But it's the environment that seems suspicious to us."
Alsobrook says that during the Carter Administration, researchers began to pursue possible environmental causes of disease. But she and other activists charge that health officials in the Reagan and Bush administrations seemed more interested in individual risk factors, such as high-fat diets, she charges.
"The research on the environment was just stopped," says Alsobrook. "Women were herded back into this little room and (told) 'You're eating too much fat. You weigh too much. You're not getting enough exercise. It's something you're doing.' People keep saying we should take better care of ourselves. But if (the cause) is in the air and food and soil, what can we do about that?"
Activists say they have grown impatient with theories that "blame the victim." They want to know why women in Contra Costa County have a 40% higher incidence than women in Kern County. They want to know why breast-cancer rates on Long Island are 15% higher than the rest of New York state.
Scientists already know that women with a family history of the disease and those with certain reproductive histories (such as having children late in life) are at increased risk of developing breast cancer. But what troubles many patients is that two-thirds of them have none of the known risk factors, says Dr. Susan Sieber of the National Cancer Institute (NCI).
"We don't know very much about environmental agents that might be contributing to breast-cancer risk. But the fact remains that we can only account for about 40% of breast-cancer cases, based on well-known and recognized risk factors, like family history," Sieber says. "So there are a lot of cases that we have very little idea about the cause."
Because of these unexplained cases, the federal government has launched its first studies on breast cancer and the environment.
What is significant about the petition drive, the rally in Westwood and the many other events held around the nation in October--Breast Cancer Awareness Month--is that advocates are successfully pressing science to look at possible environmental causes, an area breast-cancer researchers have largely ignored.
Barbara Balaban, director of a breast-cancer hot line on Long Island, hit the ceiling one day last year when she heard that state officials had dismissed a possible environmental link to explain the abnormally high-breast cancer rate on Long Island.
"The real turning point in my activism was when the state issued those studies . . . and they said that no further studies are indicated at this time. That absolutely blew me away," says Balaban.
Angry activists took their concerns to the federal government, and Balaban was invited to sit on a Centers for Disease Control and Prevention panel to explore the issue. The federal panel also concluded that the characteristics of the Long Island women--their age, ethnicity and reproductive lives--were most likely responsible for the higher rate.
"They steadfastly refused to look at the environmental issue," Balaban says. "They said it was too complicated and too expensive to look at. I said, 'Don't tell me it's too difficult. If it's too difficult, try harder.' "
Angered twice, the New York advocates took matters into their own hands. They organized a two-day meeting, set for next month on Long Island, that will bring together medical and environmental researchers to explore this issue, Balaban says.