More and more women across the nation are becoming vocal and active about breast cancer. Just like AIDS activists, women are forming their own advocacy groups to press state and federal governments to do more.
The statistics, they argue, prove the need for action. More women get breast cancer than any other form of the disease. Since 1980, their numbers have grown by about 3 percent a year. In1940, one woman in 20 got breast cancer. Today, it is one in nine.
Yet, the cause remains unknown. And for many patients, surgery, radiation and chemotherapy fall short of cure.
Officials of the federal National Cancer Institute in Rockville say there has been some improvement.
"There has been progress in adjuvant chemotherapy [after surgery] and new drugs for metastatic disease," said Dr. Bruce Chabner, the institute's director of treatment. But if the cancer has spread to nearby sites, the survivalrate is only 69 percent; if it has spread to distant sites, it falls to only 18 percent.
All this is not lost on the women who have formed organizations such as 1 in 9: The Long Island Breast Cancer Action Coalition.
"I'm a very angry person. I sit here and think how long this has existed and how little has been done," said Fran Kitchek of Hicksville, N.Y. who had a mastectomy in 1987.
Scientists ought to look at issuesthat have been on the research backburner, she said. "Why don't we look at electromagnetic fields [whose currents have been suspected of triggering cancer]? Why don't we look at the effects of the workplace? What about the chemicals used in our gardens. . . . Political action is the only avenue -- women have to empower themselves to fight for their rights."
National Cancer Institute officials say breast cancer is a difficult disease to overcome. Neverthless, they say they are responding by increasing the research commitment. The federal budget for breast cancer research has risen from $75 million in 1989 to $90 million this year. But women's groups say that is only 5 percent of NCI's $1.6 billion budget, while breast cancer makes up more than 15 percent of all cancer cases.
Some in Congress think much more money should go to support lab work. "Only one out of every six grants for breast cancer research recommended for approval gets funded," said Rep. Mary Rose Oakar, D-Ohio, who has submitted a bill to add $50 million more for breast cancer research. "I don't buy the argument that we are doing all we can. That is frankly total baloney."
Women activists believe Ms. Oakar's abiding interest in breast cancer is not shared by enough members of Congress. So they have started a national umbrella advocacy group called the Breast Cancer Coalition.
The goal of the coalition, whose members include activist women's organizations as well as the conservative American Cancer Society, is to promote increased funding. (In this area, the Maryland Affiliate of the American Cancer Society is active in promoting programs aimed at the defeat of breast cancer.)
Leverage is important, said Amy Langer, one of the coalition's founders. "By bringing the power of women who are voters to bear on those who make public policy, we think wecan shift their policies and provide the National Cancer Institute with the tools to make progress."
It is not clear, though, how radical the women will be. ACT UP (AIDS Coalition to Unleash Power), a militant group that helped bring about a greater federal commitment for AIDS research, staged demonstrations, stopped traffic, and disrupted scientific meetings. That may be too strong for the breast cancer advocates, although Ms. Langer is not ruling it out.
What has added to the coalition's credibility is the support of Dr. Susan Love, a nationally respected breast cancer surgeon. "The mortality of breast cancer is the same as it was 60 years ago," said Ms. Love in a recent TV debate. "That's intolerable."
The director of the Faulkner Breast Center in Boston, Ms. Love said the major problem in treatment stems from an inability to detect tumors early enough.
Working in the coalition's behalf is the fact that the cancer institute would benefit directly through increased funding from Congress if the women's groups are successful. So, although the institute does not always see eye-to-eye with the activists, it does not want to be viewed as the enemy.
"We totally agree there is a need for better treatment," said Dr. Chabner of the NCI. "And we are working hard to find it."