Long left out of research, women decry health status


American women continue to be frustrated by a lack of answers to serious questions about their health care.

While breakthroughs are being reported in breast cancer and hormone replacement research, women's medical problems are far from being a top priority, experts explain.

"We're just beginning to see the implications of a major lag in research on women," said Mary Ann Liebert, publisher of the Journal of Women's Health in New York City. "Though we're seeing some new studies, there's still too much that we don't know."

Ms. Liebert and other experts will be debating these issues and more at the third annual Congress on Women's Health, which begins today in Washington.

The conference, sponsored by the Society for the Advancement of Women's Health Research, and the American Medical Women's Association and the Journal of Women's Health, is intended to place a national spotlight on current medical and policy issues in women's health.

Women still are not recruited into research trials as frequently as men and that fact could cost them precious years of health, experts say.

And even as the results of some pioneering women's medical research arrive, fresh medical questions are raised, highlighting the need for more research to illuminate important problems.

Some women worry about whether federal research money will be available for this research in an era of tight budget restraints.

And a recent survey shows that a third of American women think their overall health care is poorly managed and needs improvement.

A current debate over the use of estrogen by post-menopausal women illustrates the paradoxical nature of recent women's health advances, experts say.

Estrogen, the No. 1 prescription medication in the United States, has long been hailed as a wonder drug. Some post-menopausal women who take pills containing the female hormone, as part of hormone replacement therapy, report decreased discomfort, a less disabling aging process and a lower risk of heart disease.

But just as a demographic surge of baby boom women have hit their menopausal years, they have been greeted by new research concluding that long-term use of estrogen may increase the risk of breast cancer.

"It's the perfect example of the sort of emotional choices women are being forced to make when it comes to treatment," Ms. Liebert said. "Often, they're having to make them based on a lot of fears and uncertainties, and that's attributable to the gaps in research."

That uncertainty is underscored by the results of a recent telephone survey of 500 women conducted by the Warner Wellcome Healthcare Corp. The study found that 34 percent of women believed their health care was poorly managed, and 44 percent thought their care was only adequate.

The women answering the survey said they believed women need greater choice and increased access to medicine to help them manage their health.

Forty-eight percent said they believed that doctors do not take women's health concerns as seriously as men's, nor did they feel they received the level of care and attention from their doctors that men do.

A big part of the problem is that researchers just do not know enough about women's diseases, or the biological differences in men and women that might make them respond differently to certain therapies, says Kathleen B. Drennan, president of the Chicago Center for Clinical Research. Before the mid-1970s, women were completely left out of medical research trials.

"Not only did you have major studies released on heart disease and cancer, which are major killers of women, but no women were studied," Dr. Drennan said.

"What's worse, women were locked out of the research and development process as well, and that's only started changing recently."

Many experts point to the Harvard Nurses Study as an important early breakthrough for women's health research. Begun in the late '70s, the study tracked the health practices of 120,000 nurses across the country.

That study has yielded information on heart disease, osteoporosis and hormone replacement therapy. Just last week, researchers using data from the study concluded that there was no link between breast implants and auto-immune diseases like lupus, rheumatoid arthritis and scleroderma.

Another boon to women's health research was the establishment of the Office on Women's Health Research at the National Institutes of Health. Opened in 1991, the office last September launched the Women's Health Initiative, a $628 million, 15-year study of the effects of ailments like heart disease, osteoporosis and breast cancer on women.

Researchers will study 63,000 women ages 50-79 in their clinical trials. An additional 100,000 women will be observed but not involved in the clinical phase. Researchers hope to develop new therapies and approaches to managing ailments that plague women.

But as research budgets tighten, Dr. Drennan said, there is a danger that scientists may rely on existing data instead of launching new studies. That danger is underscored by recent developments in Congress, where both the House and Senate have voted to cut nearly $1 billion from the NIH budget over the next seven years.

"Where do you think they'll start cutting first?" Dr. Drennan said. "I'll tell you. In research on lupus, and estrogen and other areas that affect women, that's where."

On a more immediate level, experts say women must empower themselves to get the most from their health care.

"The most important thing women can do is to make sure their doctor is knowledgeable about their issues," said Ms. Liebert.

Women have to be more involved in their treatment, and be unafraid to get second opinions or to ask questions, Ms. Liebert said. And if there is a history of a particular ailment in their families, they should ask their local doctors or call local universities to inquire about research opportunities, she added.

Though studies show many women prefer a female doctor, Ms. Liebert said gender does not always guarantee good treatment.

"It has to be judged based on who is most involved, on who will commit themselves to getting you the best treatment and information available," she said.


Here are the top health concerns for American women; the health problems that have the most serious impact on women's lives, according to researchers at the National Institute of Health's Office of Research on Women's Health:

* Heart disease

* Breast cancer

* Sexually transmitted diseases

* Immune system diseases

* Diabetes

* Lung cancer

* Reproductive health

* Behavioral factors related to disease prevention/intervention (e.g. alcohol and other drug abuse, sexual behavior, diet, etc.)

* Occupational and environmental effects on health

* Health and mental health factors associated with depression, eating disorders, anxiety and addictive behaviors

* Health and mental health factors associated with violence and trauma, including child abuse, physical and sexual assault, rape, elder abuse and domestic violence

For more information on how to become involved in an NIH clinical trial, call (800) 54-WOMEN.

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