Excerpts from Ourselves Growing Older

WOMEN’S STAKE IN CHANGING THE SYSTEM

National health reform may not address issues most crucial to women’s health, especially those affecting midlife and older women, unless we become much more active on our own behalf. In fact, basic structural reforms to the system, needed most by women, were not addressed by either the NIH research plans or the Women’s Health Equity Act of 1992. Women are bearing the greatest burdens in many instances.

Costs. Because of the growth of female-headed households and the "feminization of poverty," low-income families pay more than twice their share of income for health care compared with high-income families. Poor families pay a greater share of earnings for both personal and family insurance premiums, and eight times more for out-of-pocket, unreimbursed medical expenses for office visits, drugs, and other services.6 Insurance. Women are both uninsured and underinsured. The existing financing mechanisms are built around assumptions that we will be dependents of wage earners rather than workers or heads of households. The services women need most—reproductive health, screening, and preventive services—are frequently not covered. Basic Health Care. Even when insured, women lack access to quality medical care.7 True primary care (see "Reformspeak" box) for women is almost nonexistent. Female-headed households—women and their children—are much less likely to have access to care, especially primary care.8 Information. Women have an extremely difficult time obtaining good health- and medical-care information crucial for decision-making, for themselves or for family members. Frequently they feel frustrated and dissatisfied by the conflicting information they receive or the poor quality or inadequate amount of that information.9

We are obliged to use and learn about a system that is not designed by us or for us and frequently does not have our needs, interests, or communication requirements in mind. It is too difficult to get crucial information about technology and drugs, or about the true benefits of procedures and therapies—especially for women, older women in particular.¹⁰

More women than ever before are involved in the medical-care system at the professional level as physicians, researchers, and administrators, but most women are still clustered at the bottom of that system, doing underpaid practical, clerical, or housekeeping work in hospital systems.¹¹

The NIH program and many women’s groups call for more professional women to be involved in policy and high-level decision making in the health system as a way to improve the system’s accountability to women.¹² Including the talents of trained professional women can never be a substitute for the input and direction that the health- and medical-care system needs from community women of diverse races and cultural backgrounds. Rarely do we hear a call for more women to be involved at the community and citizen levels.

We will have to demand those better systems of accountability, planning, evaluation, and information to be available to us as individuals, families, and community members. We will have to insist that a powerful community and citizen role for women be an integral part of any new system and all patients’ rights.¹³ Otherwise, we will be obliged to rely on experts, female or male, who have not been trained to see the situation from a laywoman’s point of view, and who frequently identify primarily with professionals and special interests.

SELECTED AGENCIES CONDUCTING WOMEN’S HEALTH RESEARCH

The Agency for Health Care Policy and Research (AHCPR) conducts research on a wide variety of subjects designed to help practitioners to be more effective in dealing with many different concerns, like urinary incontinence and managing pain. These guidelines and a patient brochure are available to consumers.

The Centers for Disease Control and Prevention (CDC) conducts studies and produces weekly reports on public health problems and infectious diseases like AIDS. Now they are looking at quality of life as well as disease and death, including the chronic diseases affecting older women. Now that smoking, breast and cervical cancer, tuberculosis, violence, and other life-threatening conditions are increasingly becoming problems for older women, CDC is expanding its activities.

The Food and Drug Administration (FDA) has many scientific advisory committees charged with evaluating new and existing treatments, primarily drug therapies and new devices, many of which directly affect midlife and older women. These committees are usually appointed and include consumers as well as clinicians. They review research and practice and make recommendations to the FDA Commissioner about which drugs to approve and/or remove from the market, as well as what information should be available to practicing physicians and to consumers.

Watchdog groups like the National Women’s Health Network are constantly monitoring the activities of these committees, often help identify knowledgeable clinicians and consumers, and regularly give testimony at the FDA’s public hearings. The Network reports its findings and analysis to press and public.

The Public Health Service (PHS) is the major agency concerned with issues affecting the public health system as a whole, especially how services are organized. They have proposed a "PHS Action Plan for Women’s Health," thirty-eight goals for prevention, services, treatment, research, education, and policy, to be monitored by the Office of Research on Women’s Health in NIH.¹

The Indian Health Service is supposed to establish at least one major Indian Women’s Health Center in each of its regions.

The National Cancer Institute (NCI) has focused on breast cancer as the death rate remains unchanged and the number of women diagnosed continues to rise. However, it also studies lung cancer, which now surpasses breast cancer as the most frequently fatal women’s cancer (mainly due to active or passive smoking), as well as reproductive cancers like cervical cancer, still prevalent in older women, and ovarian cancer.

The role of U.S. women’s diet in relation to breast cancer is being studied at last, following years of effort by health activists pointing to worldwide reports linking breast cancer rates to fat in the diet. Also, funds from the Department of Defense (DOD) were recently allocated for breast cancer research.²

More recently, activists have begun raising the issue of the contribution of pesticides, radiation, and other carcinogens to U.S. breast-cancer rates (and likely ovarian cancer rates as well). So far, the NCI has not undertaken any studies to investigate environmental causes of cancer in women.

National Institutes of Health (NIH). An increased amount of NIH research dollars are now allocated through the Office of Research on Women’s Health (ORWH) mainly for three major areas of chronic disease: heart disease, breast cancer, and osteoporosis. Programs in communities will attempt to encourage healthy habits in women of all ages and backgrounds by helping them to decrease smoking, improve diets, increase regular physical activity, and maintain optimum weight.

Most of these research trials are now under way, but the results will not be available for many years. Critics of these studies, however, suggest that their design is flawed and prepared without adequate peer review; they may not be able to "prove" what they set out to show. What most women need to know—how to prevent these diseases in the first place, and how to make treatment decisions once a disease is diagnosed—may not necessarily be forthcoming.

The second prong of the ORWH program is to get more professionally trained women onto the staffs of research projects at NIH and elsewhere. This will surely be helpful to the women researchers. But it is critical that we not confuse their increased involvement with improved participation of community women, and users of the system, in planning, decisionmaking, and accountability in the health- and medical-care system.

In the past, the NIH has held a number of Consensus Development Conferences, many of them on women’s health issues, but critics say these meetings have been too easily dominated by the drug industry and researchers’ viewpoints, which emphasize particular treatments more than prevention or alternatives.

The Office of Alternative Medicine at NIH was established in 1992 to study, gather, and disseminate information about "alternative" therapies of all kinds in the United States.³ Widespread national use of these therapies was recently revealed.⁴ While this office has no special focus on older women, the fact that chronic diseases are more common in older women and are less effectively treated by conventional medicine makes this development important to watch. Many women have already discovered the benefits of acupuncture, massage, and chiropractic treatments for long-term management and comfort as alternatives to drugs and surgeries.

The National Institute on Aging (NIA) is studying issues like frailty and through pilot programs is developing a set of guidelines that could potentially help reduce some of the falls and fracture to which women are especially vulnerable. (Not all fractures are a result of osteoporosis.) Without vigorous, community-based programs to implement these recommendations, however, women will receive little benefit from them.

The Office of Technology Assessment (OTA), an arm of Congress, has conducted a number of studies and reviews on key women’s health issues, most recently an excellent report on hormone treatments at menopause. Key among its findings was the lack of adequate information available to women making treatment decisions. OTA’s work is more objective and critical than some other federal agencies’, but it is less well able to publicize its work, and often is under heavy attack from special interests.

Many of the other Institutes have programs of interest to women. One example is the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), which studies a variety of chronic diseases affecting women such as osteoporosis, urinary incontinence, gestational diabetes, obesity, interstitial cystitis, urinary tract infections, gallstone disease, and nutrition deficiency anemia, especially in the elderly.⁵ (See Resources for this chapter.)

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