Bulletin of Experimental Treatments for AIDS, July, 1998
Lynda E. Bell, RD
Lynda Bell has worked as a registered dietitian specializing in HIV since 1989. For the past 2 years, she has worked exclusively with HIV positive women at Lyon Martin Women's Health Services in San Francisco. She also is currently enrolled at Stanford Medical School as a physician assistant student in the Primary Care Associate Program.
Bell based this article for BETA on her years of experience consulting with HIV positive women about diet and nutrition. In this spirit, she addresses women about their nutritional concerns and concludes with a "wish list" with especial regard to women with HIV. The wish list is especially germane as people with and concerned about HIV, from community activists to clinical physicians to research scientists, convene in Geneva this summer.
There are so many issues to be concerned about when you find out that you are HIV positive that it may seem impossible to take care of everything. First, there is the emotional impact caused by the test result. Then there are financial issues, possibly housing issues, and perhaps issues of substance use or abuse. At some point, you begin to evaluate your health with the help of doctors, pharmacists and dietitians.
Dietitians? Aren't they just a sort of food police? Aren't they those women (most dietitians are women) who tell you that your favorite foods are no good for you—who try to make you feel guilty for not eating enough green, leafy vegetables?
Well -- no, that is not what dietitians are actually trained to do. Rather, dietitians evaluate your food choices and eating habits, your medical condition and clinical health status, your body composition and weight. Dietitians can help teach you how to make food choices that are consistent with what is currently known to be optimal nutrition for women living with HIV.
In my 9 years of working with women with HIV, I have met few women for whom nutrition was a top early priority. At some point, however, most women decide to give careful consideration to their diet. And, as women begin taking stock of the parts of their lives that they can control, they often realize that food choices are theirs to make.
Sometimes this happens when women develop an illness that causes some sort of nutritional problem, which makes diet an important part of treatment. For example, nausea and vomiting may necessitate a bland diet. In other cases, medications taken for HIV or other infections affect the liver or kidneys, which may require dietary restrictions of protein, salt or fluid. Several antiretroviral drugs, including some protease inhibitors, require thoughtful scheduling of food with drug doses. People with HIV and diabetes need to schedule meals and medications particularly carefully. In some cases, women have never given much thought to their diets, and begin to do so as part of a holistic approach to managing HIV disease.
Unplanned weight loss is often what first compels women with HIV to consider food and diet. In my experience, many women are at first delighted when they lose weight without trying. How many women have always thought that they weighed too much? (Answer: a lot.)
Losing weight when you are not trying to is called wasting. In the context of HIV disease, it is called AIDS-related wasting syndrome, and it remains one of the most common AIDS-defining diagnoses for women and men with HIV. In addition, it is one of the top 5 leading causes of death for both women and men. The causes of wasting in HIV disease are complex and incompletely understood. Wasting in women is even less well understood. Changes in food intake, absorption and metabolism of nutrients all play roles. Fluctuations in hormones and changes in the endocrine system may also play roles, and may account for the different ways that wasting develops in women compared to men.
Although women with HIV who lose weight may initially be relatively undisturbed or even somewhat pleased, wasting is a serious, even life-threatening condition that requires treatment. Better than treatment, there are measures that may be taken to prevent or delay the development of wasting -- measures that are as important for women as for men.
Today, it remains impossible for health professionals to tell someone exactly how and what to eat for optimal health in HIV disease. Some general guidelines for people with HIV have been developed that discuss energy requirements (measured in calories), protein and vitamin/mineral requirements, and strategies for diet-related health problems—for example, managing diarrhea that results from lactose intolerance, or nausea that results from antiretroviral drug regimens. Most guidelines have been borrowed from research not conducted in the context of HIV disease, such as cancer research. A few nutritional guidelines derive from research findings, and thus are sound and appropriate resources for people making decisions about diet. Three that I consider valuable references are: 1) Recommended Dietary Allowances, National Academy Press, 1989; 2) Diet and Nutrition (#882038), published by the National Cancer Institute, 1988; and 3) Positive Cooking: Cooking for People Living with HIV, by Lisa McMillan, Jill Jarvie and Janet Brauer, published by the Avery Publishing Group, December 1996 (this is a complete nutritional guide and cookbook).
So far, energy and protein needs are better defined for men; very little HIV-related research specific to women has yet been conducted. A recent literature search of the past 10 years' work on nutrition and HIV turned up 148 references. Of these 148, a total of 3 were trials designed specifically for women. Some studies have included women as subjects, but usually in numbers too small to provide statistically significant data. Most studies have included only men.
One of the few reports of data on women showed gender-specific changes in body composition when women wasted, which appeared distinct and different from those in men. Women lost a disproportionate amount of body fat relative to lean body mass, especially when compared with the types of losses experienced by men (who basically show the opposite pattern). But what do these data mean about what sorts of food choices HIV positive women should make? Do women with HIV require less protein than men? How can women best maintain their muscle mass? Does therapy with anabolic steroids, including testosterone, have a role in women's androgen deficiency and maintenance of lean body mass?
The use of anabolic steroids by women is less well understood than their use by men. However, some reports suggest that steroids may be useful for preventing or treating wasting in women as well as in men. One of the most promising candidate treatments for women with HIV-related wasting is oxandrolone (Oxandrin), an oral anabolic steroid that already has been studied and approved for men with AIDS-related wasting.
Currently, Lyon Martin is sponsoring a clinical trial of Oxandrin. This study is only for women, so has a chance of gathering important information for an understudied group. Recruitment is ongoing and challenging; many women are reluctant to try anything that might result in weight gain, even if it is important for their health. This study and studies like it must be conducted in order to gain invaluable information for women with HIV. For the sake of women with HIV, such studies hopefully will be well designed, well funded and well supported.
I hope that you will decide sooner, not later, to eat well, because the benefits to your health can be significant. With proper food, the immune system has the raw materials (protein, vitamins, minerals) and fuel (calories) for optimum performance, maintenance and repair. Nutrition affects every function of your body: walking, thinking, breathing and healing. Eating well and eating regularly will give you the highest and most sustained energy level possible. Your moods will stabilize. You will be less likely to become ill and you will likely recover from illness more swiftly. Digestive disturbances related to any cause—medication, infection or emotional upset—are easier to manage if you know what to eat.
As a dietitian I have some nutritional "wishes" for each HIV positive woman:
Women or providers interested in the Oxandrin study that is ongoing in the San Francisco Bay Area can call Lynda Bell, RD, at 415-565-7672, ext. 313.
Today, thousands of questions remain unanswered about women and HIV disease, including questions about the nutritional concerns of women with HIV. Research is key to answering these questions. As you plan for, and perhaps participate in, the next world AIDS conference, ask for data and information about research studies on nutrition. If studies are not just women's studies, ask about the relevance of the study results for women. Ask that the data gathered on women be analyzed separately and compared to data on men. Ask why the numbers of women in studies of nutrition or HIV-related drugs or any other research are so small -- often too small to yield significant results.
Sweets, fats and oils, snack foods and some beverages add flavor and calories to foods. These foods complement but do not replace food from the 4 food groups, because they are not rich in nutritional value.
2 to 3 serving per day
A source of protein, carbohydrates, calcium and vitamins D and B
One serving:
5 or more servings each of fruits and vegetables per day
Sources of carbohydrates and rich in vitamins C, A, E and potassium.
One serving:
2 to 3 servings per day
Main source of protein and rich in iron, zinc and B vitamins.
One serving:
6 to 11 servings per day
Sources of carbohydrates, B vitamins, iron and fiber
One serving:
Grinspoon S and others. Body composition and endocrine function in women with acquired immunodeficiency syndrome wasting. Journal of Clinical Endocrinology and Metabolism 83(5): 1332-1337. May 1997.
Women and HIV. Project Inform Discussion Paper. January 1998.
980701
BE980706
Copyright © 1998 - Bulletin of Experimental Treatments for AIDS (BETA). Reproduced with permission. BETA is published four times a year by the San Francisco AIDS Foundation. All rights reserved. Noncommercial reproduction is encouraged. Subscription lists are kept confidential. Call 415.487.8060; FAX: 415.487.8069. Mailing Address: P.O. Box 426182, San Francisco, CA 94142-6182. beta@sfaf.org http://www.sfaf.org/beta.html
This information is designed to support, not replace, the relationship that exists between you and your doctor.