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Hunger Strike

Originally published Dec 2006

By Lori Shontz, St. Louis Post-Dispatch, December 4, 2006

The breast cancer diagnosis was bad. But for LaVerne Holliday, the well-meaning advice that followed was worse. Doctors told her that to get the biggest benefits from her treatment, she needed to eat well.

Eat well? Some days, Holliday was lucky to eat at all.

Since losing her job as a jazz radio show host, she had worked as a part-time street vendor. Selling peanuts outside Busch Stadium barely paid the rent. Holliday says that she ate the peanuts she didn''t sell and that when that wasn''t enough, she visited downtown hotels with free breakfast buffets and pretended she was a guest.

More than a year later, she still shakes with shame as she tells how she wore an oversized coat and, after eating breakfast, stuffed her pockets with fruit, bagels and pastries for later. She reddens as she describes being caught by hotel staff and ordered out. Says Holliday, "I was eating to survive."

The cancer diagnosis, in September 2005, increased her problems. Chemotherapy made her too weak to sneak into hotels. Baseball season was over, so she had no income. She had no idea how she would buy any food, let alone healthy food. And she wasn''t strong enough to cook anything healthful, anyway.

Help arrived in the form of Food Outreach, which has given groceries and frozen meals to low-income HIV/AIDS patients since 1988. After a successful pilot program with the Siteman Cancer Center, in which Holliday participated, it recently expanded its services to low-income cancer patients.

Food Outreach isn''t the first organization of its kind to expand its reach. Enough have done so that their national organization, ANSA, has changed its name from "AIDS Nutrition Services Alliance" to "Association of Nutrition Services Agencies."

"There''s an unmet need out there," says Greg Lukeman, Food Outreach''s executive director. "My vision is, it shouldn''t matter what (disease), especially when somebody is going through a life crisis. This is just one less thing they need to worry about."

ANSA members have more practical reasons, too. By expanding its client base, Food Outreach has become eligible for other grant money, which is especially important because of federal funding cuts for HIV/AIDS. So although feeding more clients costs more money, those other clients are actually bringing in more money as well.

"There are fixed, hard costs to keep the lights on, hire people and keep them happy," Lukeman says. "I''m going to have those expenses anyway. So if there are some grants and revenue streams I can apply to those costs, then the variable HIV/AIDS costs go down, and conceivably we can feed more people with HIV."

Using nutrition to fight disease

At the beginning of the AIDS epidemic, many communities formed programs to help people with the disease get meals. Not much else could be done. Lukeman, who began to volunteer for Food Outreach in 1989, says, "I heard about this mystery disease and that people were dying, and what do you do? People have to eat. Food is so tangible."

At that time, Food Outreach consisted of a small group of people cooking for seven AIDS patients. Those patients were literally wasting away, and they simply needed calories.

"We just had to fatten them up — that''s how we''d keep them alive," Lukeman says. "It was more butter, more butter. You were swimming in the stuff. We were putting butter on pork and everything."

Now, with better medications and higher survival rates for AIDS, Food Outreach works both to provide healthful food and to teach healthy eating habits.

Research presented earlier this year at the International AIDS Conference showed that malnutrition decreases an HIV-positive person''s ability to absorb drugs and to cope with side effects; malnourished people taking antiretrovirals are six times more likely to die than nonmalnourished people on the same drugs. Although those studies focused mostly on patients in developing countries, the same principles apply for any patients who aren''t eating well enough.

In this country, low-income people can get help from food pantries, which can be godsends. But a 2004 article in the Journal of the American Dietetic Association, cited by Food Outreach, points out that the typical bag from a food pantry contains enough bread products for seven days, meat for three days and produce for three days. It adds that much of the food does not provide enough of some nutrients, including calcium and vitamins A and C.

At Food Outreach, clients make selections from a menu that includes grocery staples (in cans and boxes) and frozen meals prepared by Food Outreach''s chef and volunteers. They get a new menu every two weeks; their grocery bag is designed to provide two meals a day for two weeks. Items change with the seasons and availability.

Entrees can include meatloaf with gravy, barbecued chicken breast or whitefish with lemon and dill sauce. Canned juices are available, as are rice, grits, oatmeal and a variety of canned soups. Among recent fruit and vegetable options were frozen spinach, garlic and zucchini; fresh sweet potatoes; and fresh apples.

"Patients, unfortunately, unless they have another system of support, can have issues with not getting adequate nutrition," says Shirley Johnson, director of oncology services for the Siteman Cancer Center. "Our dietitians are very, very faithful in identifying patients who might be losing weight, and we do have a program here to provide some nutritional supplements. But that''s not the same as being able to have access to real food that tastes good. Yes, you can get the calories in, but it just isn''t as easy. This is just so much more real."

Tips and strategies

In its expansion, Food Outreach is putting years of expertise to work. Side effects of cancer treatment include dry mouth, difficulty in swallowing, nausea or vomiting, heartburn, diarrhea or constipation. All of those affect AIDS patients, too, so registered dietitian Carrie Weatherholt, who consults with each patient, has a tried-and-true list of strategies for relief.

For constipation, consume more fluids, fiber, fruits and vegetables. For nausea, don''t lie down after you eat, even if you don''t feel well. If you''ve got dry mouth, don''t rinse with Listerine, which contains alcohol and makes the mouth drier.

"It''s little things," Weatherholt says. "They''re so overloaded with information, they don''t think to ask about it at the hospital. I''m a second person that they can talk to about all that. Sometimes, the first."

Other information is more specific. Women undergoing certain breast cancer treatments, Weatherholt says, actually gain weight.

"They''re nauseated and feel better when they eat," she says. "So we talk about making wise choices about what you''re eating."

For instance, many clients say they don''t buy produce because they don''t finish the food before it spoils. Weatherholt suggests putting produce where it''s visible, making you more likely to eat it. Use the crisper drawers for condiments such as ketchup and mustard; you''re going to search for those, so it doesn''t matter if you can''t see them when you open the refrigerator.

Eating healthfully doesn''t always come naturally.

Lower-income neighborhoods are less likely to have grocery stores, and many lower-income patients don''t have cars, so they may need to take public transportation to shop. If they''re weakened by illness or a treatment, that can be less of an option.

"They end up shopping at Walgreens, where there''s not a real selection," Weatherholt says.

"Or the gas station," Lukeman adds. "And usually, if there is a grocery store in some of these areas, sad to say it''s going to be more expensive."

Help when needed

Food Outreach has prided itself on never turning away someone in need and in providing help for as long as someone needs it; some clients have been picking up groceries for a decade or more. Other clients drift in and out; they get groceries when they are going through a hard time, either financially or medically, but stop when their situations improve.

Says Lukeman, "I hear, ''Give my spot to someone who really needs it because I want you to be here when I really need you.''"

Food Outreach currently has more than 1,300 HIV/AIDS clients and 75 cancer clients. Because there''s no cure for AIDS, those patients will remain. But with cancer patients, the parameters must change.

"What will be the trigger for people to roll off?" Lukeman says. "Clearly we want people as early after diagnosis as possible to beef them up, and we''re there for treatment. Then we want to be there for a certain amount of time after treatment. But technically, they are not living with a life-threatening disease at that point."

Food Outreach also expects a waiting list for cancer patients, although it doesn''t have one now.

"What we have found is that if we can get patients through their first course of chemotherapy, as long as six months, and some of the most significant fatigue that a patient might have, it tends to get better," Johnson says. "We really hope to be able to utilize this program for that first six months.

"Some patients just think it''s a lifesaver. It''s one less thing they''ve had to worry about."

Count Holliday among that number. She especially likes the frozen chili, which she can reheat in the microwave even when she''s exhausted. She feels stronger, both mentally and physically. And she appreciates that she found a group of people who care.

"A lot of people don''t have a support system," she says. "I didn''t know I was going to need it. But now I don''t feel down all the time."


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