San Francisco Chronicle - Monday, November 22, 1993
David Tuller, Chronicle Staff Writer

"I was a healthy 18-year-old who fainted because of spasms of her uterine artery, and getting Valium was like being told it was all in my head," said Johnson, a psychiatrist on the clinical faculty at the University of California at San Francisco and one of the country's leading advocates for women's health.

In the 1960s and 1970s, experiences like Johnson's inspired women to create a self-help movement focused largely on access to contraception and reproductive care at alternative health facilities. But now, armed with statistics and studies documenting a long history of second-class treatment by the medical establishment, women are spearheading what some have called "the second women's health movement" -- a broad-based effort to revolutionize the way American health care is researched, financed and delivered.

Johnson and other advocates, openly admiring the success of AIDS advocacy groups, are agitating for everything from the creation of a separate medical specialty on women's health and increased government employment of women scientists to more research on the specific health problems faced by lesbians and minority women.

The movement has become so politically potent that both state and federal officials -- pressed by angry women on the outside and the growing number of female politicians on the inside -- have been forced to acknowledge it.

Just one year ago, a California bill that would have added two cents to the cigaret tax for breast cancer research and treatment died in the Assembly after an emotional floor debate. This year, both the Assembly and state Senate passed the bill in the wake of heavy lobbying by breast cancer activists, and last month Governor Wilson -- whose wife, Gayle, is a vocal supporter of the movement -- signed it into law.

"Women have taken a page from the community of interests in support of AIDS funding and recognized that the only way you could truly get action was to politicize the health issue of concern to you," said Assemblywoman Jackie Speier, D-South San Francisco, a longtime advocate for women's health issues.

WOMEN'S MOVEMENT GAINING

During the Reagan and Bush era, the fierce fight over abortion overshadowed and stymied efforts to address other women's health concerns. Now, under the Clinton administration, the "second women's health movement" has gained significant momentum.

Women's health advocates applauded the selection of Donna Shalala and Joycelyn Elders as, respectively, the secretary of health and human services and the surgeon general. First lady Hillary Rodham Clinton's ascension as the country's leading apostle of health care reform has been another welcome sign, especially because women are more likely than men to lack adequate health insurance under the present system.

To date, breast cancer activists, spurred by a marked increase in reported cases of the disease in the past two decades, have been far more aggressive than advocates for other women's illnesses and have received the most attention.

For the current fiscal year, federal officials, flooded with calls and petitions from the National Breast Cancer Coalition and other groups, allocated $340 million for research, up from $208 million last year and $100 million in 1991, according to the National Institutes of Health.

The administration's recent decision to increase the frequency of mammograms to be offered under the proposed health insurance benefits package further spotlighted the issue. So did the much-talked-about photograph of a woman with a mastectomy scar that appeared on the cover of the New York Times Magazine in August.

Many women have become involved in the issue only after suffering their own bout with breast cancer, which annually hits 180,000 American women and kills 46,000. Nancy Evans, 55, a medical writer who was diagnosed with breast cancer in 1991, said she was outraged when she learned that many doctors still routinely perform mastectomies despite evidence that lumpectomies and radiation are often as effective.

"If there were as many men losing a vital body part every year as there are women losing breasts, I think doctors would be a little more sensitive to the issue," said Evans, president of Breast Cancer Action in San Francisco, one of dozens of advocacy groups that have sprung up across the country in recent years.

But Johnson and other advocates for women's health say that the problems -- and the movement's goals -- extend far beyond the issue of breast cancer.

Cardiovascular disease, which includes heart disease, hypertension and strokes, kills an estimated 365,000 women annually -- half of all female deaths. Studies have shown that women who arrive at emergency rooms with chest pains wait twice as long as men for a doctor, and women are twice as likely to die from bypass surgery. Yet almost all research on the development and treatment of heart disease and related illnesses has been conducted on men.

Another killer, lung cancer, leads to the death of more than 50,000 women annually. And osteoporosis, which causes bones to become brittle, affects up to half of all post-menopausal women and accounts for $7 billion to $10 billion of annual health care costs, according to the Washington-based Society for the Advancement of Women's Health Research. But there has been little research on how those diseases progress in women.

Many doctors and researchers, say women's health advocates, still pay scant attention to immune system diseases that disproportionately affect women, such as lupus and chronic fatigue immune dysfunction syndrome. And the medical establishment, they add, has failed to grasp that domestic violence is a critical women's health issue, even though some studies indicate that battering accounts for about 20 percent of the visits by women to hospital emergency rooms.

The medical gender gap received widespread public attention three years ago after the General Accounting Office investigated the research programs of the National Institutes of Health. The GAO report, which galvanized women's health advocates, revealed that the NIH spent just 13 percent of its research budget on investigating specifically how diseases affect women.

WOMEN EXCLUDED FROM STUDIES

Despite the NIH's own policies calling for the inclusion of women in study populations, the vast majority of subjects in research on illnesses that affect both sexes were men. When women were included, the agency generally failed to track their numbers.

Researchers at the NIH and pharmaceutical companies have used cost factors, female hormonal cycles and other reasons to justify excluding women from studies despite solid evidence that they respond differently to drugs because of their smaller size and other physiological factors. A second GAO report found that the Food and Drug Administration expressly barred women of childbearing age from some drug trials because of concern that they might become pregnant.

The research community's approach "has been to consider over half the population as some sort of special case," said Representative Olympia Snowe, R-Maine, when the GAO report was released. "Their attitude has been like that old song from the musical `My Fair Lady' -- `Why Can't a Woman Be More Like a Man?' "

As a result of this gender gap in research, women struggling with major illnesses such as AIDS often find themselves in a quandary when choosing among various treatment options.

Earlier this year, Rebecca Denison of Women Organized to Respond to Life-Threatening Diseases, an Oakland advocacy group for HIV-infected women, sat on a NIH-sponsored panel that was revising treatment guidelines for the anti-viral drug AZT. When she asked researchers for data on how the drug affects women, she said she received "blank stares" rather than answers.

"It's awful that I have to tell women who call me that there is no one on the planet who can answer their questions because the research hasn't been done," she said.

WOMEN POLITICIANS JOIN FIGHT

The rise in the number of female legislators, including California's two senators, has clearly bolstered the push for change in the old order. The Congressional Caucus for Women's Issues requested the 1990 GAO study and is pushing for passage of the Women's Health Equity Act of 1993.

The omnibus package comprises 32 pieces of legislation. Among its wide-ranging provisions: allocation of money for research on RU-486, the French abortion pill; expansion of research on women and alcoholism, lupus and ovarian cancer; Medicare coverage for bone mass measurement for women at risk of osteoporosis; and prohibition of female circumcision.

In California, where the new cigaret tax is expected to raise $38 million a year, Speier and Assemblywoman Barbara Friedman, D-North Hollywood, have joined forces with their Democratic and Republican counterparts on a flurry of women's health legislation. The issue, said Speier, "has allowed women in the Legislature, regardless of party, to come together in a common campaign that desperately cried out for equity."

Women's health advocates have achieved other notable advances:

-- The NIH, which three years ago created an Office of Research on Women's Health, has begun the Women's Health Initiative, an ambitious $625 million study of more than 100,000 women. A key goal of the study is to shed light on the causes and treatment of a host of illnesses, including breast, colon and rectal cancer; heart disease; and osteoporosis.

-- The introduction two years ago of the Journal of Women's Health, a medical publication that offers scientists an authoritative outlet for their research and clinicians a source for up-to-date information.

-- After pressure from women with AIDS, the federal Centers for Disease Control in Atlanta last year expanded its definition of AIDS to include symptoms that appear frequently in women, such as invasive cervical cancer. "Women with HIV were dying even before receiving an AIDS diagnosis," said Denison.

While women's health advocates applaud such changes, they note that it will be years before most women benefit from current efforts to revamp research priorities. Johnson, the San Francisco psychiatrist, said one way to ensure real change across the board would be to create a separate medical specialty on women's health concerns -- a controversial proposal that even some women's health advocates fear would ghettoize the issue.

But whether or not that comes to pass, all agree that the movement has touched a raw nerve.

"We're on the edge of radical change," said Johnson. "We've given the system 20 years to respond and it hasn't, so now we must insist that the medical institutions concern themselves with the problems that are killing us."

CAPTION: PHOTO

At 18, Karen Johnson was given Valium when she complained of severe menstrual pain; now she's fighting for health care reform/PHOTOS BY LEA SUZUKI/THE CHRONICLE

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