Setting Standards

The Expert Panel for Developing National HIV/AIDS Nutrition Guidelines

"Taking medicine without eating properly is like washing your hands and drying them in the dirt."

woman with sandwichAt a recent HIV/AIDS conference that I attended, a doctor described the miraculous recovery of one of his patients who had come back from severe wasting and TB and was healthy enough to begin fighting her HIV successfully. He talked about her medication schedule in detail, but failed to mention nutrition.

During the question-and-answer period that followed his presentation, I asked him about this patient's nutrition support. He apologized for his oversight and repeated to the audience an expression he had been told by one of his patients at his clinic in Haiti: "Taking medicine without eating properly is like washing your hands and drying them in the dirt." Well said.

Have you ever asked the same question about your nutrition needs to two different nutritionists -- both of them well respected in the HIV/AIDS community -- only to get two different answers?

As a nutritionist working with people with HIV and AIDS, I get the questions all the time:

  • "How much protein should I eat?"

  • "Is it really important to eat vegetables so I can get these new phytochemicals I keep hearing about? Why can't I just take the supplements advertised on TV and in magazines instead of worrying about eating my vegetables?"

  • "Sugar? It can't be that bad--it seems to be added to everything I eat."

  • "If there is an HIV/AIDS diet that is scientific and not just a matter of opinion, why can't the nutritionists just give it to PWA/HIVs who really need it? We have the Food Pyramid that the government says is the best way for the general public to eat. Why can't they do the same thing for an HIV disease diet?"

Bringing Nutrition Out of the Healthcare Closet

The people with HIV disease and others who have been making these comments to me are right! We certainly seem to have a wealth of nutrition information, but very little consistency. Every day we read about something else that is good for the control of HIV disease or of an opportunistic infection. The problem is that we have not yet organized what we know into a format that everyone can agree on. Some food and nutrition organizations have put out guidelines, but none carries the blessing of the federal Office of HIV/AIDS Policy.

This problem is not unique to HIV and AIDS. If you make a list of the illnesses that plague our country--the many different cancers, cardiovascular diseases such as heart attacks and strokes, diabetes, high blood pressure (hypertension) and obesity, to name just a few--you will find that the nutrition component is still very often left out of prevention and treatment efforts, or its importance is greatly understated. Take the case of cardiovascular disease, for example. The evidence that eating badly is a major contributing factor to the illness began to be collected over sixty years ago. But poor diet takes a long time to manifest itself in physical illness. Perhaps that's why it's hard for us to see the connection between the two. Instead, we always seem to be looking for a gene or other built-in mechanism to blame for our poor health.

"An ounce of prevention is worth a pound of cure." We've heard the saying all of our lives, but it's not one that we take to heart, at least when it comes to nutrition. We know from many studies that children who eat nutritious meals do better in school, have fewer behavioral problems, and get sick less often than their less well-fed peers, but our WIC program, aimed at meeting the nutrition needs of children in needy families, is funded to only about one-half of those in need. When Medicare was created about 35 years ago, funding for nutrition services was not part of the menu. Even our Food Pyramid is not getting the attention it deserves: This educational tool and symbol of healthy eating currently has an advertising budget of only one million dollars per year. A large fast-food company may spend that much advertising its junkburgers in a matter of hours.

As a final example, it is important to note that most medical schools in the United States don't teach nutrition. It's not surprising, then, that the Journal of the American Medical Association's piece entitled "Initial Evaluation of the HIV-Infected Adult Patient," found in The Sanford Guide to HIV/AIDS Therapy, does not even mention the word "nutrition."

Fortunately, there is light at the end of the tunnel. Nutrition education and diet therapy are--slowly--gaining recognition. In September 1993, the National Cholesterol Education Program issued its Second Report of the Expert Panel on Detection, Evaluation and Treatment of High Blood Cholesterol in Adults, complete with a section on "Dietary Therapy and Physical Activity." A bill called "The Medicare Medical Therapy Act of 1999," now before Congress and enjoying bipartisan support, would pay for outpatient nutrition counseling and therapy by certified and registered nutritionists.

Setting HIV/AIDS Nutrition Standards

In some ways, the importance of nutrition--or at least of food--in dealing with HIV/AIDS has been apparent since people first started getting sick. AIDS wasting was an almost universal symptom, and the immediate goal was to put weight--any kind of weight--back on people who were literally starving to death. As nutritionists worked with people with AIDS in those early years, however, it quickly became apparent that the kind of weight is important, and that nutrition intervention early in the disease process is vital in heading off some of these symptoms and keeping people healthy. The "ounce-of-prevention/pound-of-cure" metaphor is particularly apt when dealing with lean body mass.

Although nutritionists working with people with AIDS have from the beginning shared their experiences and learned from each other, in both formal and informal groupings, there have not until now been any officially sanctioned standards for HIV nutrition therapy and counseling. Then, late last year, Eric Goosby, M.D., Director of the Office of HIV/AIDS Policy, called a meeting to start developing national HIV/AIDS nutrition guidelines.

Over 100 health professionals were invited to participate in the November 15, 1999, meeting, and about seventy were able to attend. I was honored to be one of the participants. The group was made up of nutritionists, dieticians, M.D.s, food and water safety specialists, and government organizers from all over the country. In a letter to the participants, Dr. Goosby explained that the plan of the meeting was to ". . . begin developing national guidelines for nutritional management intended to improve clinical care and outcomes for people living with HIV/AIDS. Our goal for this project is to see medical nutrition therapy become routine in primary HIV health management. These National HIV Nutrition Guidelines are intended to become a 'companion' to the PHS Treatment Guidelines that so effectively and quickly transformed the quality of medical care for HIV-infected persons.

"We anticipate that the National HIV/AIDS Nutrition Guidelines will include or encapsulate established and recently developed nutrition documents. We also anticipate that the process will illuminate areas of nutrition that (1) need further research and examination, and (2) need greater integration in HIV medical management. . . ."

The discussion about the need for guidelines was an old one for me and my colleagues in New York City. But the discussion about this guidelines meeting in Washington started taking place the week before I left for D.C. I called several nutritionists whom I respect and often work with in New York to ask them what message they thought I should bring to Washington. Not surprisingly, all the people I spoke with had similar ideas about what should be done, even though their individual emphasis was often in different areas of nutrition. What we agreed on was to emphasize the need to eat food and drink water first, when possible, and to use supplements as supplements, not as main courses. On the train to Washington the day before the meeting, the discussion continued with another New York-based nutritionist I met at Penn Station, and it was expanded on the evening of my arrival at an informal reception hosted by two of the main organizers.

The Guidelines Meeting

Monday morning the meeting began in earnest. The seventy attendees were in their seats and ready to begin by 9:00 a.m. The feeling in the room was one of excitement and anticipation.

The day was broken up into three main sections: overview, breakout sessions, and a meeting summary with closing remarks. The overview lasted two hours. We were welcomed and given information on issues that would be discussed at the meeting: metabolic problems in HIV disease and nutrition's role in the solution; the federal role in existing guidelines; integration of nutrition guidelines with existing guidelines; a short history of nutrition landmarks; and, last but by no means least, the rules of evidence needed in order to determine whether or not a recommendation can be made.

This last area may be among the most critical. The "gold standard" for research is the randomized, double-blind, placebo-controlled study. I asked myself, How many nutrition research studies have been done this way? How many eating studies have been done this way? Have any studies been done comparing nutrient quality in food with that in a supplement? Have any studies been done comparing nutrient absorption from food rather than from a supplement? The answers, by and large, are negative.

The next four and a half hours were devoted to the breakout sessions. (That includes one hour for lunch. It would probably be instructive to discuss what this group of nutritionists had for lunch, but space and the value I place on my life do not permit me to divulge such highly classified information!) The large group was divided into six smaller groups, each with a specific area of nutrition to discuss. These were: general management issues in nutrition and metabolism; assessment of nutritional status, body composition, and HIV-associated morphologic change; recognition and management of metabolic and morphologic complications of HIV disease and its treatment; prevention and treatment of weight loss and wasting associated with HIV disease; other food and diet issues, including water and food safety; and supplemental micronutrients, macronutrients, chemicals, herbs, and other substances.

I don't know how the decisions were made about who was put into which group, but I was very pleased to be asked to be a co-leader of the "other food and diet issues" group. This group welcomed discussion of many social issues that we considered fundamental to setting up accurate guidelines. For example, all the counseling in the world is meaningless if you don't have a roof over your head, a place to cook, or the food itself. Counseling is also wasted if there is a language problem, or if written materials are given to people who have trouble reading.

After the breakout sessions, during the meeting summary, the leader of each group reported to the reassembled gathering on the work the group had done. The comments made after the group reports turned out to contain some of the most important information of the day.

The Challenge

Dr. Goosby, in his closing remarks, outlined the difficulty that we face in producing guidelines that have the blessing of the federal government. Many people support and understand the importance of nutrition in HIV disease, but some of the key questions remain: Do we have gold-standard research to back up our recommendations? If not, how can we most effectively propose guidelines? Should they be guidelines, or merely suggestions or recommendations?

It was fitting that Dr. Goosby was highlighting these difficulties, since he is the one who is going to have to promote and implement the suggestions of the panel. If guidelines are adopted, they could become the standard that federally funded nutrition programs around the country will have to adhere to.

This is not a responsibility to be undertaken lightly. Actually, one of the difficulties we nutritionists have in our daily professional lives is figuring out what is effective and what is the nutrition fad of the day. Another problem is that approaches that show great promise for improving the health of PWA/HIVs but have a very low probability of profit are often very poorly studied. Should we use information based on good evidence that a particular approach works for many people, even when it doesn't have any gold-standard research to back it up?

There seems to be a gap between what we recommend as scientific nutrition therapy in some other diseases and what we recommend as scientific nutrition therapy in HIV disease. One of our jobs has to be to make nutrition therapy in HIV disease as routine and consistent as it is in other illnesses. The panel is equal to the task. There will be many more meetings and discussions to come before HIV/AIDS nutritionists will have the guidelines to enable us to speak with one voice. Stay tuned for more developments.

HIV/AIDS Nutrition Goals

Specifically for HIV and AIDS, what could be some of the aims of nutrition therapy and counseling?

  • The first goal could be to determine what the person was like physically before becoming HIV-positive: Was he or she obese or heavily muscled? A couch potato or an athlete? On a good diet?
  • The second could be to help meet or exceed the amount of muscle the person had before becoming positive. Introduce the person to proper eating and exercise.
  • The third aim could be to help get the person back to her or his original weight, or to maintain it.
  • Fourth, teach about food and water safety.
  • Fifth, advise about the ability of food to ease some of the GI side effects of medications.
  • And sixth, teach the importance of maintaining eating and medication schedules to ensure maximum absorption of medications.

  • Edwin Krales is Coordinator of Nutrition and Outreach at the Momentum AIDS Project and co-leader of the Food, Water Safety, and Other Issues group of the Expert Panel. He is a frequent contributor to Body Positive.

    Back to the April 2000 Issue of Body Positive Magazine.