Food for Life

While Thanksgiving is a culinary song and dance in most U.S. households, for the chefs at Project Angel Food the holiday meal-planning was easy compared with most days. For one thing, there were only two menu choices: turkey and all the fixings, and a vegetarian alternative.

On regular days, the kitchen staff at the Hollywood organization must whip up 22 different meals for delivery to people disabled by HIV and AIDS.

There are bland meals. Low-fat meals. Meals to fight diarrhea, diabetes or supplemented with calorie-rich drinks to help people put on pounds.

The varied menu says much about the significant strides that have been made in treating people living with HIV and AIDS. Powerful combinations of virus-fighting drugs mean that people are living longer and more normal lives than ever before.

But that progress also has posed new challenges. Each drug--and some patients take handfuls of different ones each day--has its picky requirement: take on a full stomach, empty stomach, or with a fatty meal. And the drugs have various side effects--nausea, vomiting, taste changes; altered body shapes; and heightened risks for heart disease, stroke and diabetes.

Thus, never before have HIV-positive people faced such a complex, daily balancing act in their effort to remain healthy and strong. And this, say AIDS nutrition experts and doctors, makes thorough nutrition counseling, monitoring and therapy crucial.

Adequate nutrition, after all, can make a life-or-death difference to a person infected with HIV. Research shows that weight loss--independent of the state of a virus-infected person’s immune system--is a strong risk factor for serious medical complications and death. Even a 5% weight drop is associated with increased risk of early death and major secondary infections.

Too often, though, the importance of nutrition isn’t stressed by medical teams, says Marcy Fenton, a registered dietitian with AIDS Project Los Angeles, which, like Project Angel Food, offers nutrition counseling and monitoring.

“I can’t tell you how many clients I’ve met who tell me--though I think some may not recall--that they’ve never had a visit with a dietitian,” she says. Simply telling people to “eat a good diet” isn’t enough, she says, since many patients don’t know what that means--or how to do it--and nurses and doctors don’t have the time or specific expertise to provide adequate nutrition monitoring.

Tracking by a Dietitian Helps

Dr. Joseph Church, head of the children’s AIDS center at Childrens Hospital Los Angeles, also stresses the importance of a registered dietitian following patients from HIV diagnosis onward. The center’s dietitian tracks not only kids’ weight but also muscle mass. She counsels on diet and food safety and uncovers eating problems that often don’t come up during doctors’ visits.

In the years before the revolutionary virus-fighting drug AZT and the stronger drugs that followed, the bodies of people infected with the virus would often “waste” away to heartbreaking, stick-like thinness.

“We were all little string beans,” recalls South Bay resident Brian Lowe, 38, who’s been HIV-positive for 17 years. Lowe, whose weight dropped to 119 pounds at one point, now tips the scales at 185.

In the early years of the AIDS crisis, the goal of health care professionals who cared for AIDS patients was “just to feed people as much as possible--with whatever they could or wanted to eat,” says Joya Parenteau, a registered dietitian and manager of nutrition services with Project Angel Food. “It was high calorie. Creams, gravies and ice creams were really stressed.”

Wasting has not gone away: Many people struggle daily to keep their weight up, especially children, who must not only maintain weight but grow. And it’s not mere weight people have to worry about. Muscles and organs can shrink dangerously even when overall weight stays constant--due to extra fat deposits, or fluid retention--requiring constant vigilance with techniques that can track such changes.

But wasting is not as pronounced or common now that replication of the virus is more under control.

Instead, over the last couple of years, other distressing and life-threatening conditions have shown up, with nutrition implications of their own.

Jean Marcella Bellanca, 54, who was diagnosed as HIV positive in 1988, knows about some of them. Her blood triglycerides are high, raising her risk for heart disease and stroke. Her belly has swollen from fatty deposits. The back of her neck has a small but noticeable “buffalo hump” of fat.

“Bill,” 53, who asked that his real name not be used, has unhealthily high levels of blood cholesterol and triglycerides--as does Lowe. Both are taking medication to help lower them.

Nobody knows why this is happening to people like Bill, Bellanca and Lowe--this gamut of changes known technically as “lipodystrophy.” Fat melts from the buttocks, limbs, cheeks, and around the eyes. It builds up deep in the abdomen, behind the neck, at the breasts, and in fatty lumps--lipomas--about the body.

In the blood, levels of LDL (or “bad”) cholesterol and triglycerides soar, while HDL (or “good”) cholesterol falls--raising the risk for heart disease and stroke. The body responds sluggishly to the sugar-storing hormone, insulin, causing blood sugar to rise in some patients--a classic early warning sign of diabetes.

Protease Inhibitors Not the Sole Culprit

At first, doctors thought a class of HIV-fighting drugs called “protease inhibitors” were to blame: hence, slang terms like “protease paunch” for the characteristic swollen belly. Now, however, the symptoms are showing up in people who have never taken protease inhibitors. Some doctors suspect that a wider array of the virus-fighting drugs--including protease inhibitors--are to blame.

Whatever the cause, the implications are potentially serious. Abdominal obesity is a known risk factor for diabetes, hypertension and heart disease--and there have been reports of diabetes, heart attacks, strokes and blocked blood circulation to the limbs in young HIV-positive patients.

And even if some of the body changes aren’t harmful, they are traumatizing to people and may serve to “out” their HIV status to others. Anything, experts stress, that discourages people from staying on the drugs that keep them alive is not to be shrugged off lightly.

Until the day that researchers understand and can deal with lipodystrophy, diet and exercise can probably help, says Dr. Fred Sattler, a professor at the USC School of Medicine. This, he believes, should be the first line of attack, before prescribing lipid-lowering drugs that might cause side effects or interfere with the antiviral drugs.

Heart-Smart Diets Advised

Thus, for their hearts, many patients are being advised to cut down on saturated fats (found in red meat and dairy products) and trans fats, found in many baked goods, fried foods and stick margarine. To eat complex carbohydrates, like bread and pasta, instead of simple ones found in sugary foods, to help ward off diabetes.

Aerobic exercise--such as a half-hour several days weekly on the treadmill or racquetball court--can help lower “bad” blood lipids, improve sugar metabolism and help burn off abdominal fat. And resistance training, such as weightlifting, not only helps with heart and sugar metabolism but encourages the building of muscle.

Clinical studies showing that such efforts improve the health of HIV-infected people are lacking, but doctors and dietitians are noticing a difference in people who keep to these regimens.

“We’ve seen substantial responses,” Sattler says. “People are decreasing the circumference of their abdomens. Their LDL cholesterol is going down, their HDL is coming up.”

Parenteau, too, is encouraged.

“I am measuring clients’ girth at the waist or the neck, and a couple of people who are exercising and really watching their diet--they’ve lost inches, and they are maintaining, if not increasing, their muscle mass,” she says.

Bill, for one, is taking all he’s learned to heart. He learned most of it from services at AIDS Project L.A.: No one at his HMO sent him to a dietitian, he says.

Two years back, an alternative doctor counseled him to stop taking his anti-HIV medication and eliminate animal products from his diet. The consequences of this change soon became clear: Body composition analyses showed he lost 10% of the weight of his muscle and organ tissue within months.

He went back on the drugs and is now eating a diet that’s less lean and mean--though he’s trying to limit his saturated fats to help deal with his high cholesterol.

“I was overdoing it at first, eating meat three times a day,” he says. “Now I’m eating more tuna, chicken and fish and cutting out butter and full fat milk.”

Lowe, too, is trying to take care of himself. Even when he was at his weakest, he says, “there were times when I’d call a friend and say, ‘Come for a walk with me.’ He would show up, we’d walk to the next house, I’d sit on the fence and rest, and then I’d walk back. The whole walk was 25 feet.”

Personal Contact Enhances Education

Times are better now. Lowe’s cycling 10 miles a week, weight training three times a week and trying to eat healthy. He credits Project Angel Food for helping to educate him, and to feed him.

But even without the food and counseling, there’s the simple human matter of hearing another voice, or seeing another face.

“I’ve been homebound for probably four years mostly; I go out maybe twice a week,” Bellanca says. “Some days, the people who deliver my food are the only people I see. They chat a little while. They ask me how I’m doing. Sometimes, if they feel like you’re feeling bad, they might bring you a few flowers the next time they bring your food.

“I really don’t know how I’d feel if they ever stopped coming.”