Healthcare workers and community advocates have to work with the institutional responses where they are at — and as noted above these run the gamut, from programmes simply offering "nutritional advice", to the delivery of actual parcels of food, to helping people plant gardens or other "policies/programmes" that increase household income so that people have the money to improve their diets on their own.
But these programmes are not always easy to access or work with, and caregivers often struggle to refer patients to humanitarian programmes, community-based home care programmes and/or civil services.
According to Chris Green in Indonesia “There are a number of donors who have offered nutritional supplements for us to distribute to people with AIDS in our network. One typical one offered three container loads on noodles. Among the conditions was that we had to take all in one shipment (where the hell would we store them?), they would provide no funding for further distribution, and we had to ensure that the product was not sold at any stage. These conditions were clearly impossible for us to accept,. However, a national NGO operating TB clinics has accepted similar offers and distributed the product to its TB patients.”
South Africa’s comprehensive HIV/AIDS plan goes to great lengths to ensure nutritional security of people with HIV, though not always successfully. According to Dr. Halima Dawood in KwaZulu Natal — the province with the highest HIV burden, “the [nutritional] programmes are not well integrated; it seems that they are overwhelmed by numbers.”
“I am fortunate that my hospital dietician has an interest in this subject. She provides patients with food packs [and multivitamins] that supplement the nutrition and dietary advice. I also refer patients for HIV grants in order to supplement the household income.”
Dr. Dawood is very fortunate indeed to have a dietician on staff as the country’s HIV treatment plan actually mandates that a clinic must have a dietician on staff before it can be accredited to treat patients with antiretrovirals. This particular nutritional intervention actually serves as a barrier to the rollout. Said Dr. Francois Venter, “is a dietician really necessary? I don’t understand this obsession with getting a dietician when for the diabetes programme, we often have situations where people are given dietary advice by nurses and counsellors who don’t necessarily have a dietary degree.” Ironically, he notes, “I have more fat patients with HIV in my clinic than thin ones.”
But the situation can vary dramatically by setting — even within the same country. According to Dr. Paul Roux in Cape Town “A significant proportion of families attending our paediatric HIV/AIDS clinic (at Groote Schuur Hospital) number amongst the ‘destitute poor’.”
“We run a nutritional survey of children attending our clinic. In our clinic we have a patient base of approximately 500 children. Of these, some 75% are on anti-retroviral treatment and the rest are either new patients whose mothers are being counseled and prepared to start ARVs, or established patients who do not yet need ARVs. Of our patients new to the system, approximately 40% have a weight below the third percentile for age or growth faltering. For the patients on treatment, approximately 4% have weights below the third percentile for age.”
The good nutritional status of the children who are long-term patients of the clinic can be explained by an exceptionally well-integrated nutritional programme operated at this government-funded public hospital. “Management includes screening height and weight at each visit, multivitamin, vitamin A and trace element supplementation. Children who are failing to thrive qualify for a government-funded food supplementation scheme (PEM scheme). We facilitate, through our social worker and counsellors, applications for all the grants (children’s grant and disability) for which the mother and child might qualify. Because the hospital is some distance from the community, the Groote Schuur Hospital benevolent association provides funds for return bus fares to and from the clinic.”
They have also set up their own NGO within the clinic (visit www.kidzpositive.org) to do fund-raising and to run an income generation project. Says Dr. Roux. “This is a craft project which enables those mothers most indigent to earn between R600 and R800 per month, in addition to whatever grants they can obtain. Currently 90 plus mothers in the clinic (and some satellite sites outside our hospital) benefit from this project. It has proved sustainable — running for 3 years — and has earned participating mothers an aggregate income of just over 1.3 million Rand (from an initial donation of R 4000).
“Some of our mothers have taken the skills learnt from the craft project to develop businesses of their own. We also employ some of the mothers in the administration of the project.”
Dr. Simon Sadler has experience working in Asia and Australia with another population with specific nutritional needs: “Some of our local clients are homeless and use injectable drugs. Some of the interventions we use for this group include area (geographical) specific resources of where people can access free and cheap food. These include charity services, food vans etc. (often much of this knowledge comes from people living in these conditions – over time we learn from them about what services are available).”
Our panellists are also concerned with mixed messages people with HIV received about the role of multivitamins in HIV infection. Even though South Africa provides free multivitamin supplements (at reasonable recommended daily doses) to people with HIV, Mathias Rath has been selling poor vulnerable South African’s mega-doses of his own expensive brand of vitamins (see http://www.aidsmap.com/en/news/59AB8C74-AF40-4500-A389-9B39DA28E7EA.asp). According to Dr. Venter, Rath is an “opportunist, trying to make money in the back of the national programme while pretending to be the voice of nutrition.”
Dr. Henry Barigye has observed a similar problem in Uganda, “I have done a study in Uganda and found that many people living with AIDS (PLWA) are using incredibly expensive food supplements for benefits which I think they could easily obtain cheaply with natural foods. The industry has a long list of supplements with fancy names like "immune booster" marketed aggressively by people whose primary motive is to make profit. These supplements should not be marketed as medications but they get away with it because of our weak regulatory system.”
“PLWA should be well advised to use their money to buy natural food that would benefit the whole family. Although vitamins were referred to as health-giving foods in our early science instruction, it does not mean the more the better. Too much of some of these micronutrients is not healthy. Finally, food supplements should be taken as that-supplements. They supplement an adequate well-balanced diet.”
Chris Green points out that even well-meaning community based-organisations can over-emphasise multivitamins “Groups in our network frequently feel called on to offer vitamin supplements to members by operating a form of buyers club. While this may be of some value, many times these are provided to folk who are eating poorly. We generally feel that the members would be better served by the buyers club going to the market every morning and buying good fresh vegetables and fruit for distribution to members. However, this is less exciting, and more complicated for both the group and the members, who may not have the time or the facilities to cook the purchased product.
“The challenge is often not so much with availability of suitable foodstuffs, but the lack of time and cooking facilities in the home.”
Dr. Sadler also recognised this as a challenge “We use cooking classes using cheap (but nutritious ingredients) which require little in the way of facilities (such stoves, fridges etc.). The idea being to expose our clients to a range of new foods and enhance their overall nutritional intake. Evaluation of these groups has been good, clients feel they are learning new living skills and also learning a little about nutrition at the same time.”
“At the present time we are trying to set up a few interventions (in north west China) working with local communities. Some of the interventions we are putting forward include growing some foods at home (in pots or gardens), raising chickens (obviously where space allows), food co-operatives (the idea being for people to pool their money and resources to negotiate better prices for bulk purchase staples such as flour, rice, coal, oil, meat, vegetables), developing resources on cheap yet nutritious foods, making some foods at home (such as yoghurt, bread, noodles), negotiating with local traders for individual contracts, developing community gardens. These are particularly hard to establish based on PLWHA capacity based on health, resources, disclosure, ability to form into collectives etc.”
“Our nutrition team has established a group called HANSAR (HIV/AIDS Nutrition Strategies in the Asian Region), one of the key aims of this group is to network HIV nutrition interventions in this region. We are all keen to learn from the experience of others. Cultural specific food security interventions should be a key consideration of all HIV care programs as nutrition is such an important part of holistic care.”