HIV/AIDS treatment and care in resource poor communities

A total package of treatment and care

In a community where there is a high level of HIV infection, the comprehensive care that needs to be provided is shown diagrammatically below.

Treatment and care consists of a number of different elements including voluntary counselling and testing (VCT), food and nutrition, support for the prevention of onward transmission of HIV, follow-up counselling, protection from stigma and discrimination, spiritual support, the provision of antiretrovirals (ARVs), treatment of STIs, management of nutritional effects, prevention and treatment of opportunistic infections (OIs), traditional treatment, palliative care, preparing for death, family and orphan support.

HIV positive people have differing needs according to their stage of HIV infection. The first stage is when people are asymptomatic, that is when they have no signs/symptoms of their infection. The second stage is when people have symptoms of HIV infection. The third stage relates to support and care of people who are terminally ill and nearing the end of their life.

This page has been divided generally into the care needs of people at different stages of infection. The different aspects of care and support are all generally described at the first point at which they are needed. For example, VCT should ideally be provided at the asymptomatic stage, but it may also be needed at a later stage for those who did not wish to be tested earlier.

Asymptomatic stage

Voluntary counselling and testing

Voluntary HIV counselling and testing (VCT) plays a key part in HIV-related prevention and care. It is particularly important as a starting point for the access of other HIV/AIDS-related services. If a person does not know they are infected, they cannot get any treatment or care. It is widely recognised that knowledge of their HIV infection can help a person to stay healthy for longer as well as preventing new infections. In too many places people are diagnosed with HIV when they are seriously ill. At this point, there are fewer opportunities for cost-effective interventions, which can improve their quality of life. VCT also provides benefit for those who test negative. For those people who learn that they are negative, it may result in a change of behaviour.

Recently, the provision of VCT has become easier, cheaper and more effective due to wider availability of rapid HIV testing. The advantages of rapid testing are:

The personnel involved with rapid testing do not have to be fully qualified health care workers. Rapid testing can be performed by someone with basic health care training (e.g. knowing how to draw blood and how to use the testing kit).
There are no complicated storage requirements for some of the rapid tests, which increases the number of sites where they can be used. In particular, rapid testing can be provided in a building without electricity.
Before rapid testing was available people had to visit a testing site and then wait, often for several days, before coming back for their test result. With rapid testing people can wait and have their test result within an hour, and this removes the problem of people not returning to get their test result.

Food and nutrition

Nutrition is an essential part of any HIV care package. Nutritional care and support includes many components and, particularly when a person is asymptomatic, it must include an adequate quantity and quality of food. Improved nutrition is not enough in itself to keep people permanently healthy, as demonstrated in the late 1980s in the United States and other countries, where many people developed opportunistic infections, progressed to AIDS and died, even though they had an excellent diet. Nevertheless, good nutrition may help prolong the period of time between HIV infection and the onset of opportunistic infections.

In some communities affordable food supplementation may be feasible and it can have a positive impact on both body composition and weight. For example, The AIDS Support Organisation (TASO) has been distributing food to clients for many years as part of an overall community outreach response in Uganda.

With regard to vitamins and minerals, it is unclear to what extent these are helpful in the early stages of HIV infection. Several studies have been published on the role of vitamins and minerals in HIV disease progression and mortality. Primary associations were initially promising and micronutrient supplementation has the potential in a resource poor country to be an affordable and relatively easy to deliver public health measure. The findings from micronutrient supplementation trials have, however, been mixed.

Nutrition also plays an important role in regard to the provision of antiretroviral treatment. The effects of the drugs are less well understood in people with poor nutritional diets than in people with good nutritional diets. It is also important to consider the interactions that can occur between poor nutrition or food restriction and some drugs, particularly protease inhibitors.

Prevention of onward HIV transmission

When educating people about onward transmission of HIV, two modes of transmission need to be considered:

Transmission of HIV from one adult to another
Mother-to-child transmission of HIV (MTCT)

Adult transmission of HIV

People who are HIV positive should receive counselling to help prevent them from transmitting HIV to another adult. Sexual behaviour counselling should include information about safer sexual behaviour through condom use, fidelity and voluntary abstinence. Counselling can be provided by lay counsellors from the community, and should challenge cultural barriers that may otherwise prevent condom use.

Condoms are important in preventing the onward spread of HIV, and they must be readily available to those who need them. But providing condoms to people must not be seen just as the provision of a commodity. Providing condoms must also involve informed choice and empowerment as well as a supportive environment. If people are to use condoms effectively in order to prevent further transmission of HIV, they must know how and why they should use them.

AVERT.org has more about the prevention of sexual HIV transmission.

Mother-to-child transmission of HIV

Mother-to-child transmission (MTCT) of HIV can occur during pregnancy, at the time of delivery, and after birth through breastfeeding. An important part of the prevention of further transmission of HIV is the education of a mother to be, about the different options she has, and what implications these options have for the health of her and her baby.

In general, HIV positive women should avoid any unnecessary invasive procedures during labour and delivery. There is also some evidence that women who are seriously ill with AIDS are more likely to pass HIV to their baby, so caring for the health of the mother not only helps the HIV positive woman, but may also help to prevent her child from becoming infected.

Transmission through breastfeeding is a significant route of transmission of HIV, and the World Health Organisation (WHO) recommends that when replacement feeding is acceptable, feasible, affordable, sustainable and safe, HIV positive mothers should avoid all breastfeeding. But the vast majority of women breastfeed their babies because they have no safe, acceptable or feasible alternative. Even when breast milk substitutes are provided free of charge, serious obstacles may be present such as a lack of water and sanitary conditions, confusion as to appropriate use, cultural beliefs about what babies should ingest, and stigma from family or community.

If a woman is going to breastfeed, exclusive breastfeeding is now recommended during the newborn's first months of life, as some studies have found that non-exclusive breastfeeding may be an additional risk factor in transmitting HIV through breast milk. The WHO describes exclusive breastfeeding as giving an infant only 'breast milk from his/her mother or a wet nurse, or expressed breast milk and no other liquids, or solids with the exception of drops or syrups consisting of vitamins and mineral supplements or medicines'. If a woman is going to exclusively breastfeed then she will need continued counselling and support.

In many resource limited countries the antiretroviral drug nevirapine is now available free of charge from the manufacturer. More generally when antiretrovirals do become available they are often first made available as a part of MTCT programmes. Antiretroviral drugs such as nevirapine are able to cut HIV transmission by at least 50%. The simplest course of antiretroviral drugs consists of one dose given to the mother during labour and another to the child within 72 hours of birth.

The provision of nevaripine and other antiretrovirals for preventing MTCT is to be greatly welcomed, as it will prevent many children from being born HIV positive. But the failure to provide antiretrovirals for the mother at the same time has serious consequences. The child itself may become orphaned when its mother dies of AIDS, and the woman may feel that others only care about her child and not about her own well being. And without the availability of antiretrovirals, a woman's higher viral load may increase transmission through breastfeeding.

AVERT.org has more about preventing mother-to-child transmission.

Follow-up counselling

Follow-up counselling can help someone to understand, cope with, and accept their HIV positive status. HIV infection affects all dimensions of a person's life: physical, psychological, social and spiritual. And counselling should consider both the physical and mental well being of a person.

Counselling should inform people about the facts of HIV infection. Correct information helps to dispel myths about HIV and AIDS, which are widespread in some parts of the world. One such misconception is the 'virgin cure' myth, which is the mistaken belief that having sex with a virgin will cure and/or prevent AIDS.

Support is also crucial to the success of any medical treatment. It is important that the person understands why and how illnesses related to HIV should be treated. The person should also be informed what treatment and care are available locally and how they can access them. Even in very resource poor countries with minimum infrastructure, some treatment can be made available.

Stigma and discrimination

Stigma and discrimination associated with HIV and AIDS are one of the greatest barriers to preventing further infections, providing adequate care, support and treatment, and alleviating the impact of HIV/AIDS. Stigma and discrimination are triggered by many factors, including lack of understanding of the disease, myths about how HIV is transmitted, prejudice, lack of treatment and social fears. Stigma and discrimination can deter people from getting tested, contribute to them infecting others and prevent people who are infected from receiving adequate care and treatment.

Myths fuel stigma, discrimination and risky behaviour. It is often believed that members of the community who lead 'normal lives' cannot become infected with HIV and only those who are immoral and promiscuous get infected. HIV/AIDS related stigma and discrimination also make people reluctant to find out whether or not they are infected because they are afraid of the reactions of others.

Wider access to VCT can lead to greater openness about HIV/AIDS and less stigma and discrimination. Seeing other people speaking out about their infection status can then encourage other people to come forward for testing. If people get tested and speak out when they are not seriously ill, this can change the image of HIV/AIDS from illness, suffering and death to living positively with HIV. If this is to happen, it is essential that people who speak out be provided with adequate support. There are some examples where adequate support has not been provided and people speaking out have faced verbal and physical abuse.

The involvement of people living with HIV/AIDS in activities for reducing stigma and discrimination is essential. Having people speak openly about their HIV status is one of the first steps to be taken in tackling stigma and discrimination. This can make people realise that HIV is part of their community and not just 'someone else's problem'. In addition, the role of people who are HIV negative should not be underestimated. HIV negative people who speak out about HIV/AIDS can help to promote wider support for those who are infected.

There is no single answer to the problem of stigma and discrimination but there are many things that can be done to help. No policy or law will be effective by itself. The fear and prejudice that lies at the core of the HIV/AIDS discrimination needs to be tackled at the community and national levels. A more enabling environment needs to be created to increase the visibility of people with HIV/AIDS as a 'normal' part of any society.

AVERT.org has more about HIV/AIDS stigma and discrimination.

Spiritual support

Even if people have not been actively involved with a church or religious group, many people find great comfort from priests or other spiritual leaders during chronic illness. Others however may feel pressurised into talking about spiritual issues by loved ones, when they would prefer not to.

Sexually transmitted infections (STIs)

Sexually transmitted infections (STIs) - sometimes known as sexually transmitted diseases (STDs) - are a major health concern in resource poor countries. Data from large number of studies conducted in four continents provide evidence that an STI is a co-factor for HIV transmission. An untreated STI can increase the chances of both acquiring and transmitting HIV by up to tenfold. This suggests that STI control has the potential to play an important role in the reduction of sexually acquired HIV transmission.

If an HIV positive person has an untreated STI, the potential to spread their infection grows. A person who is HIV positive and also has an STI may also progress to AIDS more quickly. Therefore, treating an STI during the asymptomatic stage of HIV is important, since this can keep the person healthy for longer.

AVERT.org has more about sexually transmitted infections.

Provision of HIV/AIDS antiretroviral drugs

The provision of antiretroviral drugs (ARVs) is just one part of the treatment and care that needs to be provided for HIV positive people. Although great efforts are being made to provide ARVs for resource poor communities, the reality is that for many communities it will be some time before ARVs are available. In the meantime there are many other things that can be provided, as described in this document, and these will not exclude the provision of ARVs when they are available. Indeed, when ARVs do become available the existence of these other services will make the provision of ARVs both easier and quicker.

When ARVs do become available, whether they are made available for asymptomatic people will depend on a number of different factors, and in particular the availability of CD4 tests, which measure the strength of a person's immune system. Where CD4 tests are available, the WHO recommends that ARVs should be offered to an asymptomatic person if they have a CD4 count below 200. If CD4 tests are not available then ARVs are generally not recommended for people who are asymptomatic. AVERT.org has more information about the WHO's recommendations and the provision of treatment in resource poor communities.

Symptomatic stage

Management of nutritional effects

HIV/AIDS and malnutrition are interrelated. In fact, in Africa AIDS was initially known as 'slim disease' because of the wasting syndrome often seen in people with the disease. Research suggests that malnutrition increases the rate of progression of HIV infection, and it may also increase the risk of HIV transmission from mother to baby. In turn, HIV infection makes malnutrition worse through its attacks on the immune system and its impact on nutrient intake, absorption and the body's use of food. Malnutrition associated with HIV infection has serious and direct implications for the quality of life of people with HIV/AIDS. Weight loss is often the event that begins a vicious circle of increased fatigue and decreased physical activity, including the inability to prepare and consume food and reduced productivity.

In people with symptomatic HIV disease there are likely to be several overlapping processes taking place:

Reductions in food intake

This may be due to painful sores in the mouth. Fatigue, depression, changes in mental state and other psychological factors may also play a role by affecting a person's appetite and interest in food. Economic factors affect food availability and the nutritional quality of food. Side effects from medications can result in lower dietary intakes that can cause weight loss associated with HIV/AIDS.
Nutrient malabsorption

Malabsorption accompanies the frequent bouts of diarrhoea that often affect people with HIV. It is also believed that HIV infection itself may cause nutrient malabsorption.
Metabolic alterations

HIV infection results in an increased need for energy and protein as well as inefficient use and loss of nutrients. Changes in metabolism occur during HIV infection because of severe reductions in food intake, as well as the immune system's response to the infection.

When food is restricted, the body responds by altering the production of insulin and glucagon, chemicals that regulate the flow of sugar and other nutrients in the intestine, blood, liver and other body tissues. Over time, the body uses up its carbohydrate stores from muscle and liver tissue and it begins to break down body protein to produce glucose. This process causes protein loss and muscle wasting.

Management of weight loss in HIV/AIDS is complicated by the fact that these three mechanisms are not mutually exclusive. Weight loss and wasting in people with AIDS may be the result of all three processes.

For the first two causes of weight loss and wasting, malnutrition can be reduced by treating the immediate sources of the problem (oral thrush, mouth sores or other infections) and providing foods that are soft and well tolerated by the infected person. People with diarrhoea should take plenty of fluids or use oral rehydration solutions to avoid dehydration and replace the lost fluids in the body. People with symptomatic HIV should try to eat as frequently as possible, even if the amounts of food are very small each time.

AVERT.org has more about HIV and nutrition.

HIV-related opportunistic infections

People with advanced HIV infection are vulnerable to infections or malignancies that are called 'opportunistic infections' (OIs) because they take advantage of the opportunity offered by a weakened immune system.

Providing prevention and treatment of OIs and HIV-associated diseases can:

Reduce the suffering of people living with HIV/AIDS and improve their quality of life and the quality of life for their families.
Allow people with HIV/AIDS to continue as contributing members of their families and communities for as long as possible.
Prevent the further spread of TB and other transmittable opportunistic infections.

A partial list of the world's most common opportunistic diseases and infections includes:

Bacterial diseases such as tuberculosis (TB), mycobacterium avium complex disease (MAC), bacterial pneumonia and septicaemia ('blood poisoning').
Protozoal diseases such as pneumocystis jirovecii pneumonia (PCP), toxoplasmosis, microsporidiosis, cryptosporidiosis, isopsoriasis and leishmaniasis
Fungal diseases such as candidiasis, cryptococcosis (cryptococcal meningitis (CRM)) and penicilliosis
Viral diseases such as those caused by cytomegalovirus (CMV), herpes simplex and herpes zoster virus
HIV-associated malignancies such as Kaposi's sarcoma, lymphoma and squamous cell carcinoma

Find out more about the prevention, treatment and care of HIV-related opportunistic infections.

Traditional healers and medicine

Traditional treatments for HIV/AIDS can be attractive as they are accessible, culturally appropriate and acceptable, and they may also be affordable in resource poor countries. Traditional medicine differs greatly from region to region and is often very specific to a location. People with HIV/AIDS often become frustrated with management of their disease and many are willing to try anything in the hope of staying healthy for longer.

There is little evidence that such therapies are safe or effective in treating HIV infection. Whilst some of the traditional treatments may be helpful, others may do more harm than good. Traditional medicine should not replace more proven modern treatments if they are available. However, in the absence of such treatments, traditional medicine can be a feasible option if it relieves pain and makes the patient feel better.

End of Life Care

Palliative care

End of life care is an important part of palliative care. In many resource poor countries, the existing health infrastructure is inadequate to provide care in a hospital for people who are approaching the end of their life. Often, the only option available for care of people with AIDS is care at home, and even when hospital care is available this may not be what people want.

Whether in a hospital, hospice or home, palliative care aims to provide comfort and support for people who are terminally ill and, ultimately, to allow them to die with dignity. This can involve controlling pain, treating symptoms such as diarrhoea and vomiting, relieving psychological or spiritual anguish, and supporting families and carers.

It is estimated that at least half of all people with HIV will suffer from severe pain in the course of their disease, and so might require strong pain killers such as morphine. However, such medications are often impossible to obtain in resource poor communities, and in many countries this problem is worsened by restrictive legislation. When available, it is recommended that health workers should not withhold pain relief because they worry that a patient will become addicted to the drugs. Pain medication should be reviewed frequently and increased when necessary, and pain should be controlled in a way that keeps the patient as alert and active as possible.

Preparing for death

It is often believed that it is not appropriate to talk about the fact that somebody is going to die, and that mentioning death will in some way hasten it. However, for those who wish to discuss death, open discussion, ideally from early diagnosis, can help dying people to feel that their concerns are heard, that their wishes are followed, and that they are not alone.

Most people want to know that they will be remembered. Encouraging friends and family to share stories or memories of the person's life makes the person feel loved and cared for. People who are nearing death are frequently afraid of dying in great pain. Health workers or carers should be able to reassure patients that pain relief will be carried out up to the point of death.

Another great worry is what will happen to patient's dependants after they die. Where possible, plans should be made for dependants and partners. Although it can be distressing to discuss these issues, making plans can reduce anxiety. Making a will can also prevent family conflict and ensure that partners and children are not left destitute. This is particularly important where 'property grabbing' is common.

Practical issues to be discussed before death:

Custody of children
Family support
Making a will
Funeral costs
Future school fees

Emotional issues to be discussed before death

Resolve old quarrels
Tell patient and family members that they are loved
Share hopes for the future especially for children who are left behind
Say goodbye to carers and providers

Family and orphan support

For family members, partners and friends, looking after someone with HIV can be very daunting. And the need to offer counselling to partners and families following the death of a family member or friend is often overlooked, particularly in resource poor countries.

Counselling can help a person to discuss their loss and to mourn appropriately. The family members may have unresolved fears about HIV infection for themselves, and can be helped to come to decisions about HIV testing. The process of grieving may last many months, and possibly even years. However, for some people a single counselling session may be sufficient to clarify their thoughts and feelings, and to reassure them that they are coping as best as they can under the circumstances. Other people may need several sessions, and some people never completely come to terms with a loss, particularly that of a child.

The impact of loss of life differs across families and communities, but one thing is clear: a child's life often falls apart when she or he loses a parent. More than 15 million children under 18 have lost one or both parents to AIDS. Caring for these children affected by HIV/AIDS requires action at all levels. In the countries hardest hit by HIV/AIDS, care for orphans lies often with their extended families or communities. AVERT.org has more information about the care of AIDS orphans.