HIV/AIDS nursing Care

There is no cure for AIDS. Although antiretroviral treatment can suppress HIV – the virus that causes AIDS – and can delay illness for many years, it cannot clear the virus completely. There is no confirmed case of a person getting rid of HIV infection. Sadly, this doesn’t stop countless quacks and con artists touting unproven, often dangerous “AIDS cures” to desperate people.It is easy to see why an HIV positive person might want to believe in an AIDS cure. Access to antiretroviral treatment is scarce in much of the world. When someone has a life-threatening illness they may clutch at anything to stay alive. And even when antiretroviral treatment is available, it is far from an easy solution. Drugs must be taken every day for the rest of a person’s life, often causing unpleasant side effects. A one-off cure to eradicate the virus once and for all is much more appealing.

Where’s the harm in fake AIDS cures?

Unproven AIDS cures have been around since the syndrome emerged in the early 1980s. In most cases, they have only served to worsen suffering. First of all, fake cures are a swindle. Someone who invests their savings in a worthless potion or an electrical zapper has less money to spend on real medicines and healthy food.Many peddlers of bogus cures insist their clients avoid all other treatments, including antiretroviral medicines. By the time a patient realizes the “cure” hasn’t worked, their prospects for successful antiretroviral treatment may well have diminished. Fake cures may also cause direct harm to health. Inventors often refuse to reveal their recipes. Some so-called cures have been found to contain industrial solvents, disinfectants and other poisons. The dangers posed by the virgin cleansing myth – which advocates sex with children as a cure for AIDS – are only too clear. Finally, the promotion of fake AIDS cures undermines HIV prevention. People who believe in a cure are less likely to fear becoming infected with HIV, and hence less likely to take precautions.

Why is it so difficult to cure AIDS?

Curing AIDS is generally taken to mean clearing the body of HIV, the virus that causes AIDS. The virus replicates (makes new copies of itself) by inserting its genetic code into human cells, particularly a type known as CD4 cells. Usually the infected cells produce numerous HIV particles and die soon afterwards. Antiretroviral drugs interfere with this replication process, which is why the drugs are so effective at reducing the amount of HIV in a person’s body to extremely low levels. During treatment, the concentration of HIV in the blood often falls so low that it cannot be detected by the standard test, known as a viral load test.Unfortunately, not all infected cells behave the same way. Probably the most important problem is posed by “resting” CD4 cells. Once infected with HIV, these cells, instead of producing new copies of the virus, lie dormant for many years or even decades. Current therapies cannot remove HIV’s genetic material from these cells. Even if someone takes antiretroviral drugs for many years they will still have some HIV hiding in various parts of their body. Studies have found that if treatment is removed then HIV can re-establish itself by leaking out of these “viral reservoirs”. A cure for AIDS must somehow remove every single one of the infected cells.

Reputable research on curing AIDS

Activating resting immune cells

Many researchers believe the best hope for eradicating HIV infection lies in combining antiretroviral treatment with drugs that flush HIV from its hiding places. The idea is to force resting CD4 cells to become active, whereupon they will start producing new HIV particles. The activated cells should soon die or be destroyed by the immune system, and the antiretroviral medication should mop up the released HIV. Early attempts to employ this technique used interleukin-2 (also known as IL-2 or by the brand name Proleukin). This chemical messenger tells the body to create more CD4 cells and to activate resting cells. Researchers who gave interleukin-2 together with antiretroviral treatment discovered they could no longer find any infected resting CD4 cells. But interleukin-2 failed to clear all of the HIV; as soon as the patients stopped taking antiretroviral drugs the virus came back again.^1 2There is a problem with creating a massive number of active CD4 cells: despite the antiretroviral drugs, HIV may manage to infect a few of these cells and replicate, thus keeping the infection alive. Scientists are now investigating chemicals that don’t activate all resting CD4 cells, but only the tiny minority that are infected with HIV. One such chemical is valproic acid, a drug already used to treat epilepsy and other conditions. In 2005 a group of researchers led by David Margolis caused a sensation when they reported that valproic acid, combined with antiretroviral treatment, had greatly reduced the number of HIV-infected resting CD4 cells in three of four patients. They concluded that: “This finding, though not definitive, suggests that new approaches will allow the cure of HIV in the future.”³Sadly, it seems such optimism was premature; more recent studies suggest that valproic acid has no long term benefits.^{4 5} In fact it’s quite possible that all related approaches are flawed because the virus has other hiding places besides resting CD4 cells. There is a lot about HIV that remains unknown.

Bone marrow transplants and gene therapy

In November 2008, a pair of German doctors made headlines by announcing they had cured a man of HIV infection by giving him a bone marrow transplant.⁶ The transplant - given as a treatment for leukemia - used cells from a donor with a rare genetic mutation known as Delta 32 that confers resistance to HIV infection. Twenty months after the procedure researchers reported they could find no trace of HIV in the recipient’s bone marrow, blood and other organ tissues. Other experts have said that more tests are required to verify this cure claim, though it is not the first of its kind. Of more than thirty HIV positive patients given bone marrow transplantation prior to 1996, two appeared to have been cured of their infection based on molecular testing and post-mortem biopsy samples. Even assuming it can be effective, bone marrow transplantation is too dangerous and costly for widespread use as a cure. Many patients die as a result of chemotherapy or reactions to the transplant, which is usually a last resort in treating life-threatening diseases. Nevertheless the German transplant does raise hope for related approaches. If scientists can find another way - such as gene therapy - to confer the same sort of protection against HIV as Delta 32 provides, then they may be able to stop the virus replicating. Research in this area is in its very early stages; it may be many years before a useful treatment is found, if at all.

Hope for the future

Some of the world’s top research institutions are today engaged in studies to learn more about the behavior of HIV, resting CD4 cells and other hiding places. But the truth is that this field does not receive a lot of funding. Some people think the search for a cure is not worth much investment because the task may well be impossible. Yet there are still those who remain hopeful, including the research charity amfAR, which in 2006 awarded nearly $1.5 million to AIDS cure researchers. Activist Martin Delaney is among those calling for an end to defeatism:“Far too many people with HIV, as well as their doctors, have accepted the notion that a cure is not likely. No one can be certain that a cure will be found. No one can predict the future. But one thing is certain: if we allow pessimism about a cure to dominate our thinking, we surely won’t get one… We must restore our belief in a cure and make it one of the central demands of our activism.”

How to spot fake AIDS cures and treatments

As already stated, there is no proven cure for AIDS. The best advice is to steer clear of anyone claiming otherwise. For those who find themselves tempted, here are a few pointers for spotting quack therapies.

Who makes the claims?

Try to find some information about the person or people promoting the product. What are their credentials? If someone claims to be a doctor then they should say what type of doctor, and where they got their qualifications.

What claims do they make?

Look at how the product is presented. Reputable scientists and doctors don’t use sensational terms such as “miracle breakthrough”. Also watch for evidence of poor scientific understanding; for example, no expert would refer to HIV as “the HIV virus” or “the AIDS virus”.It is very rare for a medicine to be 100% effective for all patients. It is highly implausible that a single product could cure a wide range of unrelated diseases such as cancer, asthma, AIDS and diabetes. A real scientist would be extremely wary of making such claims.

What’s in the cure?

Many inventors won’t reveal what goes into their so-called cures. Ask yourself why this might be. Could it be that their methods wouldn’t stand up to scientific scrutiny? It is important to remember that words like “natural” and “herbal” are no guarantee of safety. After all, hemlock and ricin (derived from castor beans) are both entirely natural and extremely toxic. As the U.S. Food and Drug Administration points out,“Any product – synthetic or natural – potent enough to work like a drug is going to be potent enough to cause side effects.”

What evidence do they offer?

To gain the approval of medical authorities, any new treatment must undergo very extensive testing. Countless products destroy HIV in the laboratory but are ineffective or dangerous when used by people. A proper trial involves a large group of volunteers divided randomly into two sets. One half uses the test product and the other receives a placebo (a harmless pretend medicine that looks like the real thing). During the trial, neither the scientists nor the volunteers should know who is getting which treatment. Afterwards, the results for the two groups are compared to see if the test product performed better than the placebo. Virtually all promoters of “AIDS cures” cannot provide any data from large-scale, randomized human trials. Instead they rely on anecdotes, personal testimonies, laboratory experiments or small-scale trials with no placebo comparison. This type of evidence is always unreliable.Personal testimonies are notoriously untrustworthy. Usually there is no way of knowing whether the people in question ever existed, let alone whether they were helped by the therapy. There have been cases of people being paid to pretend they’ve been cured. And even if a handful of people really did get better after they took the treatment, this doesn’t necessarily mean that it works; the improvements may just have been a coincidence. Many negative reports may have been left out of the promotional material.Proving that HIV has been eradicated isn’t easy. Changes in symptoms or weight gain are not sufficient, and neither is a viral load test. Even if the test can’t detect HIV in the bloodstream (perhaps because the person has been on antiretroviral therapy), this doesn’t mean the virus has been cleared from all parts of the body. Much more thorough investigation is needed.

Beware of conspiracy theorists

Many sellers of fake medicines fall back on conspiracy theories to explain why their products haven’t undergone proper testing. They say that government agencies and the medical profession seek to suppress alternative treatments to safeguard the profits of the pharmaceutical industry.This kind of allegation is a sure sign of a charlatan. In reality, leading scientists investigate all kinds of therapies that can’t be patented. For example, the U.S. government has funded research into using generic drugs (such as valproic acid) and human hormones (such as interleukin-2) as aids to ridding the body of HIV infection.

Do some research

Any important medical breakthrough will be reported in peer-reviewed journals such as Nature, Science or The Lancet. The mainstream media will pick up the story and leading experts will express their opinions.Simply typing the name of a supposed cure into an Internet search engine and reading some of the resulting web pages will quickly establish whether it has widespread support. It is also worth searching an online medical database such as PubMed for scientific studies and reviews.

Consult an expert

Always talk to a doctor or other health professional before trying any medical treatment. If you need more information or a second opinion, try contacting a reputable health organization or telephone helpline 

 Introduction

Between 70% and 90% of illness care takes place within the home. Much of the care for people with HIV and AIDS is provided at home by immediate family and friends, as well as by home based care organizations. Providing care for people with HIV and AIDS in the home has many potential benefits for both infected and affected people, yet there are many failings in the support given to careers. Research evidence clearly demonstrates that most people would rather be cared for at home and that effective home care improves the quality of life for ill people and their family caregivers. 

            A potential benefit of home based care is that sick people are continually surrounded by people they love and are familiar with, so they can also receive more flexible and nurturing care. They will also not be exposed to hospital-based infectious diseases. As people with terminal illness generally spend their final moments at home, strengthening the capacity to be cared for also removes the cost and distress of traveling to and from the hospital when they are weakest.

            Because CHBC uses a multidisciplinary approach and tries to bridge the gap between family/community on the one hand and the health system and services on the other, the full participation and support from both sides is very much needed. Also the input and participation of people living with HIV/AIDS (PLHA) is necessary, to ensure that the planning of activities is relevant in responding to the needs of people.

 Definition

CHBC is defined as any form of care given to ill people in their homes (WHO, 2002). Such care includes physical, psychosocial, palliative and spiritual activities. Community home-based care (CHBC): This can be defined as the care and support that people living with HIV/AIDS and other chronic illnesses receive in their homes, through their families and communities (International Federation of Red Cross and Red Crescent Societies and National Societies, 2003)     

Goal of CHBC

The goal of CHBC is to provide hope through high-quality and appropriate care that helps ill people and families to maintain their independence and achieve the best possible quality of life (WHO, 2002) Home care draws on two strengths that exist throughout the world: families and communities. Families are the central focus of care and form the basis of the CHBC team. Communities are places where people live and a source of support and care to individuals and families in need.

            The CHBC program aims to meet health and psychosocial needs of individuals, families and communities who are most in need (UNAIDS, 2003). The main objective of home-based care is to improve the quality of life and survival of PLWHA and to maintain their dignity. It also aims to contribute to the reduction of stigma and discrimination against PLWHA and the further spread of the virus, and so reduce the impact of HIV/AIDS on individuals, families and communities. 

What HIV & AIDS care is needed at home?

Given the often debilitating effects of HIV, people living with HIV & AIDS may need assistance performing simple tasks that most of us would take for granted. These could include washing, cooking, feeding, cleaning, purchasing household essentials, going to the toilet and other needs not necessarily specific to AIDS but essential in helping a person live a relatively stable life.

More HIV related tasks could include purchasing, administering and supporting adherence to ARV drugs and medication for HIV related pain if the infected person is receiving such treatment, as well as helping with nutrition, as the person’s diet may differ from other members of the household. Monitoring and recording progress, making notes of events such as toilet visits, fluid intake and symptom occurrence are also other tasks that can be undertaken by family and home based care workers and volunteers.13 These very practical measures are in addition to seeing to the person’s social, psychological and emotional needs – often termed ‘psychosocial’ needs – which all of us have but which are often broader and more severe if living with HIV. This care addresses medical, nursing, emotional, spiritual, psychological, social and material needs of people living with HIV/AIDS (PLWHA) and their families.  

Who provides HIV and AIDS home based care?

Family members and friends provide the majority of home based care for people with HIV and AIDS. Among this group, however, the provision of care falls disproportionately to women and older people. Home based care organizations are the other important care providers and consist of trained health workers or volunteers linked to a hospital, NGO or faith group, for example. These people make visits to people’s homes for perhaps one or two hours. They may assist with much of the care provided by families including household chores and providing and cooking food, as well as performing more clinical tasks such as administering pain relief. They may also make referrals for more professional medical help.

They should also train existing careers on how best to safely perform day-to-day tasks such as bathing, lifting and bandaging the patient. In such cases there may be no distinction between the caring activities provided by primary family careers and those done by home based care organizations. Sometimes, a voluntary caregiver from a home based care organization will in fact be a patient’s primary caregiver.18

Maintaining regular contact with a home based care organization will also relieve a sense of isolation that the ill person and their family may be facing. Furthermore, this relationship can serve as a gateway to accessing avenues of psychosocial support during the patient’s illness and following their death. One study found home based care visits strengthened existing careers’ emotional strength, underscoring the need for this type of intervention as well as highlighting the psychosocial impact of providing unsupported care.

  Models of Home-Based Care

There are different types or models of home-based care, depending on national policy or local community situations.  In determining which model is best for a given situation, it is important to take into account such factors as cost, stigma, community resources, sustainability and adequacy of systems available to support CHBC. 

1. Facility-Based or Outreach

Usually a hospital outreach program, which sends outreach health care workers or teams out to periodically visit the homes and families of PLHA.  Often focus on addressing the nursing and medical needs, but have increasingly integrated psychosocial support.   

2. Community-Based Model

Community-driven and owned: typically relies on volunteers who reside in the communities covered by the program. Volunteers are trained to provide basic nursing care, emotional and spiritual support to the patient and family members. Volunteers instruct family members in caring for the patient and provide back-up support through regular visits. Transport costs minimal since volunteers live close to families. Challenge is to maintain and support the volunteers. 

3. Integrated Model

Combination of facility and community – based models: a community-based program which relies on local health facility for training, supervision, and supplies for home-care kits and ensures referrals to patients back to the facility as and when needed. Evolution into this model is a natural one in response to needs of communities, families, and patients.  This can result in a continuum of care through synergistic working relations and referrals. For example, there is a need to explore linking pharmacies with HBC services. 

4. Community Day Care Model

Patients come to a site for a few hours during the day and get services such as symptom monitoring, drugs, recreation, and counseling. This gives caregivers a respite.   

Roles And Responsibilities For CHBC

These roles and responsibilities might involve different levels of government and the activities of international, national or local nongovernmental agencies. Whatever the case, decisions must be made about which level of administration should be responsible for different aspects of CHBC. Although this might sound simple, the challenges in making these decisions can be complex.

1. National-level responsibilities

At the national level, policies are needed to guide the planning, legislation and regulation of CHBC. Central administration should be responsible for allocating resources, financing and supervising organization and management (including monitoring and evaluation). In addition, central administration should be responsible for developing human and material resources and allocating them based on clearly defined priorities. The first policy framework presented here raises many of these issues.

2. District-level responsibilities

District or middle management is responsible for allocating resources based on clearly defined priorities set by the national administration. The district level management team should also monitor standards of quality for CHBC. National standards should be adapted to meet district and local needs, and district guidelines for CHBC should be established. In addition, the rewards and incentives for community volunteer workers should be determined. Finally, district or middle management may become responsible for allocation of resources and for quality assurance mechanisms for orphan care. Although local authorities usually implement CHBC, middle management will have overall responsibility. In this sense, middle management is the interface between the policies and guidelines outlined by the national administration  and the actual planning, implementation and evaluation of CHBC programmers at the local or community level.

3. Local-level responsibilities

CHBC is applied in practice at the community level. The culture of the community organization and its norms, standards and leadership play an important role in the CHBC program. Strategies must therefore be developed that promote effective leadership and mobilize community action in planning and implementing CHBC. This community involvement includes the participation of caregivers, ill people, health and social service workers, community volunteers, community members and influential leaders. This means that all community members associated with CHBC should be involved in the initiation, responsiveness and sustainability of the programmer. In addition, this program should be integrated into existing community services and agencies. In most settings, this integration will be with local health facilities.

 4. Volunteer (care facilitator)

The volunteer identifies, trains and assists family or other community members to provide care to PLWHA at home. Experienced volunteers are often selected for additional training to enable them to coach, motivate and support other volunteers.a. Undertake formal and informal identification of chronically ill people in the community.b. Mobilize and sensitize the community in order to reduce stigmatization due to negative attitudes about HIV/AIDS.c. Conduct home visits.d. Provide family members with caring skills such as basic hygiene, nutrition and infection control.e.  Disseminate HIV/AIDS prevention information in the community.f.  Liaise with health and social service providers for referrals as necessary. 

5. Family

The role of the family is to be the primary caregiver.

a.  Provide good nutritious meals where possible.

b.  Assist PLWHA with hygiene and personal care.

c.  Assist PLWHA to be as comfortable as possible both physically and mentally.

d.  Liaise with relevant health and social service providers.

e.  Ensure treatment compliance as directed.f.  Promote and protect the rights and dignity of PLWHA and other members of the family who may be vulnerable, particularly children and young girls. 

6. PLWHA

a.  Identify own needs.

b.  Live positively by adopting positive living attitudes.

c.  Reduce risk for further transmission of HIV.

d.  Participate in HIV/AIDS prevention and care according to ability and interest   

Problems with HIV & AIDS home based care

Most of the HIV and AIDS home care is carried out by family members who have no contact with professional help and suffer through lack of support.  This means that infected people are inadequately looked after despite the best efforts of their careers and families who face economic, psychological and social difficulty.

1. Inadequate help from home based care organizations

While home based care organizations are valued by their patients there are weaknesses in how some home based care programmers are delivered. Careers’ workloads may be very heavy and they are often unable to make frequent home visits or stay with individual patients or households for very long. Any failures of home based care often stem from the shortage of investment in the individuals and organizations that carry out the work. It should also be remembered that home based care organizations cannot attend to patients around the clock, so there are limitations on what they should be expected to do. While they should be able to help with daily tasks such as changing bandages, assistance with more frequent occurrences such as going to the toilet will mostly be done by family members

2. Limited resources

The necessary supplies that should be provided in home based care kits are very often inadequate. Less than a quarter of home based care kits in the survey contained mild painkillers, and vitamins and iron supplements were largely unavailable. Most of the home based care organizations share individual kits among at least six careers who in turn have multiple patients. This inevitably creates problems over how and when to allocate the home based care kits..

3. Risks faced by careers

Caring for someone whose mobility and bodily functions have deteriorated can place great demands on the health of caregivers. Careers may risk their physical health when assisting someone, perhaps heavier than themselves, with the simplest of tasks such as getting out of bed or moving around the home. One study of both primary and voluntary careers found most suffered physically as a result of caring, with the most common problems being headaches, body aches, back aches and exhaustion. Sudden and recurring headaches also affected some careers. Some elderly women physically affected by their care work had existing ailments including arthritis, diabetes and hypertension, with one 75-year-old woman having headaches, body pain and weakness of the heart through looking after her daughter who was in her end of life stage.

Women primary caregivers were found to take on the most physically demanding tasks including bathing patients, helping them go to the toilet, changing soiled nappies, clothing and sheets, and obtaining water, sometimes a long distance away. A lack of support from other family members was found to be a significant factor in the overburdening of primary careers

4. Economic burden on the family

When a family member falls sick as a result of HIV, not only does that individual’s inability to work lessen family income, so too does the fact that careers will spend less time making money. Furthermore, at the time that the earning potential of a household is diminished, the cost of treatment, medicines and other healthcare provisions constitute an added financial burden on careers. Similarly, older people may have to return to work at the time in their lives when they might be expected to cease working and be cared for by their offspring.

While the assistance of a well-resourced home based care programmed does not eliminate the need for families and friends to divert some attention from work to care for their sick relatives, it can nevertheless make more time available for caring activities.

What are opportunistic infections? 

People with advanced HIV infection are vulnerable to infections and malignancies that are called ‘opportunistic infections’ because they take advantage of the opportunity offered by a weakened immune system.

 

A partial list of the world’s most common HIV-related opportunistic infections and diseases includes:

Bacterial diseases such as tuberculosis, MAC, bacterial pneumonia and septicaemia (blood poisoning)

Protozoal diseases such as toxoplasmosis, microsporidiosis, cryptosporidiosis, isopsoriasis and leishmaniasis

Fungal diseases such as PCP, candidiasis, cryptococcosis and penicilliosis

Viral diseases such as those caused by cytomegalovirus, herpes simplex and herpes zoster virus

HIV-associated malignancies such as Kaposi’s sarcoma, lymphoma and squamous cell carcinoma.

 

Different conditions typically occur at different stages of HIV infection. In early HIV disease people can develop tuberculosis, malaria, bacterial pneumonia, herpes zoster, staphylococcal skin infections and septicaemia. These are diseases that people with normal immune systems can also get, but with HIV they occur at a much higher rate. It also takes longer for a person with HIV to recover than it takes for someone with a healthy immune system.

 

When the immune system is very weak due to advanced HIV disease or AIDS, opportunistic infections such as PCP, toxoplasmosis and cryptococcosis develop. Some infections can spread to a number of different organs, which is known as ‘disseminated’ or ’systemic’ disease. Many of the opportunistic infections that occur at this late stage can be fatal.

 Why is there still a need to prevent and treat opportunistic infections? 

Highly Active Antiretroviral Therapy (HAART) can reduce the amount of HIV in someone’s body and restore their immune system. The introduction of HAART has dramatically reduced the incidence of opportunistic infections among HIV-positive people who have received the drugs. Yet the prevention and treatment of opportunistic infections remains essential.

 

Around the world, millions of people living with HIV in resource-poor communities have no access to HAART. And even where the drugs are available, they do not entirely remove the need for preventing and treating opportunistic infections. Sometimes it is advisable for people with acute opportunistic infections to begin HAART right away, especially if the infection is difficult to treat. However in certain cases it may be better to delay beginning HAART and instead only to administer treatment for the opportunistic infection, especially if there are concerns about drug interactions or overlapping drug toxicities.

 

Those who have already started taking antiretrovirals may require other drugs in certain circumstances. In particular, some opportunistic infections may be unmasked shortly after the beginning of HAART as the immune system starts to recover, and these may require specific treatment. Measures to prevent and treat opportunistic infections become essential if antiretrovirals stop working because of poor adherence, drug resistance or other factors.

 

Providing prevention and treatment of opportunistic infections not only helps HIV-positive people to live longer, healthier lives, but can also help prevent TB and other transmissible opportunistic infections from spreading to others.

 Prevention of HIV-related opportunistic infections 

HIV-positive people can reduce their exposure to some of the germs that threaten their health. They should be especially careful around uncooked meat, domestic animals, human excrement and lake or river water. However there is no practical way to reduce exposure to the germs that cause candidiasis, MAC, bacterial pneumonia and other diseases because they are generally common in the environment.

 

Several HIV-related infections (including tuberculosis, bacterial pneumonia, malaria, septicaemia and PCP) can be prevented using drugs. This is known as drug prophylaxis. One particular drug called cotrimoxazole (also known as septra, bactrim and TMP-SMX) is effective at preventing a number of opportunistic infections. This drug is both cheap and widely available. The World Health Organisation (WHO) recommends that, in resource-limited settings, the following groups of people should begin taking cotrimoxazole:

HIV-exposed infants and children, starting at 4-6 weeks after birth or at first contact with health care, and continued until HIV infection is excluded

HIV-positive children less than 1 year old

HIV-positive children aged 1-4 years who have mild, advanced or severe symptoms of HIV disease, or a CD4 count below 25%

HIV-positive adults and adolescents who have mild, advanced or severe symptoms of HIV disease, or a CD4 count below 350 cells per ml

HIV-positive people with a history of treated PCP.

 

According to WHO guidelines, treatment of HIV-positive children should continue until at least age five. In general treatment of adults and children should continue indefinitely, though it may sometimes be stopped following successful antiretroviral treatment.

 

Some of the worst affected countries may choose to treat all infants and children born to mothers confirmed or suspected of living with HIV, until HIV infection is excluded. They may also choose to treat everyone who is diagnosed with HIV, regardless of symptoms or CD4 count.

 

Drug prophylaxis is sometimes recommended even for those who have started HAART if they have very weak immune systems or are otherwise considered to be especially vulnerable. They may be advised to stop taking the drugs if their immune system recovers.

 

For people who have already contracted an opportunistic infection and undergone successful treatment, secondary prophylaxis may be advisable to prevent recurrence. This applies to diseases such as tuberculosis, salmonella, cryptococcosis and PCP.

 Treatment of HIV-related opportunistic infections 

Some opportunistic infections are easier to treat than others. Effective treatment depends on health services being able to procure, store, select and administer the necessary drugs and to provide related treatment, care and diagnostic services to monitor health status and treatment response.

 

A few opportunistic infections and symptoms such as candidiasis of the mouth, throat or vagina (thrush), herpes zoster (shingles) and herpes simplex can be managed effectively through home-based care. In a home-based care setting diagnosis is made by observing symptoms.

 

Some opportunistic infections may be diagnosed by observation or using a microscope, and treated where there is minimal health infrastructure. Such infections include pulmonary tuberculosis and cryptococcal meningitis.

 

In a medium infrastructure setting, the facilities available include X-ray equipment and culture facilities. Using these, opportunistic infections such as extra-pulmonary tuberculosis, cryptosporidiosis, isopsoriasis, PCP and Kaposi’s sarcoma can be diagnosed and treated.

 

Opportunistic infections such as toxoplasmosis, MAC and cytomegalovirus infection can be diagnosed and treated in places with advanced infrastructure. Treating these infections is often impossible in resource poor countries. Many developing countries lack the advanced equipment and infrastructure (such as CT scanning) needed to treat these more complex infections.

 Individual opportunistic infections 

The following are just a few of the conditions that particularly affect people living with HIV.

 Bacterial pneumonia

Pneumonia can be caused by various bacteria. Symptoms among HIV-positive people are much the same as in those without HIV infection, and include chills, rigours, chest pain and pus in the sputum. The vaccine PPV can protect people against some of the more common pneumonia-causing bacteria, and is recommended in the US.

 

Because other forms of respiratory infection including PCP are common among HIV-infected people, doctors must be certain of diagnosis before administering antibiotics. This may require a chest radiograph, blood cultures, a white blood cell count and tests to eliminate other infections. Treatment is usually aimed at the most commonly identified disease-causing bacteria.

 Candidiasis

There are two main types of candidiasis: localised disease (of the mouth and throat or of the vagina) and systemic disease (of the oesophagus, and disseminated disease). The mouth and throat variant (commonly known as thrush or OPC) is believed to occur at least once in the lifetime of all HIV-infected patients. Occurence of the vaginal variant is common among healthy women and is unrelated to HIV status.

 

While OPC is not a cause of death, it can cause oral pain and make swallowing difficult. The main symptom is creamy white legions in the mouth that can be scraped away. Oesophageal (gullet) candidiasis is a more serious condition which can cause pain in the chest that increases with swallowing. Disseminated candidiasis causes fever and symptoms in the organs affected by the disease (for example, blindness when it affects the eyes), and can be life threatening.

 

Localised disease may be treated at first with relatively inexpensive drugs such as nystatin, miconazole or clotrimazole. Systemic candidiasis requires treatment with systemic antifungal agents such as fluconazole, ketoconazole, itraconazole or amphotericin.

 Cryptococcosis

Cryptococcosis is caused by a fungus that primarily infects the brain. It most often appears as meningitis and occasionally as pulmonary or disseminated disease. Untreated cryptococcal meningitis is fatal.

 

Cryptococcosis is relatively easy to diagnose. However, its treatment (either amphotericin B with or without flucytosine or in mild cases with oral fluconazole) and secondary chemoprophylaxis are often impossible in developing countries because of high cost and limited availability of the drugs required.

 Cryptosporidiosis and isosporiasis

Cryptosporidiosis (crypto) and isosporiasis are both caused by protozoan parasites. These diseases are easily spread by contaminated food or water, or by direct contact with an infected person or animal. Both crypto and isosporiasis cause diarrhoea, nausea, vomiting and stomach cramps. In people with healthy immune systems, these symptoms do not last more than about a week. However, if the immune system is damaged then they can continue for a long time. Diarrhoea can interfere with the absorption of nutrients and this can lead to serious weight loss.

 

To confirm diagnosis of either disease, the stool is normally checked for parasites and their eggs. There is no cure for crypto, but antiretroviral therapy to restore immunity can effectively clear up the infection. For isosporiasis, TMP-SMX (trimethoprim-sulfamethoxazole) is often the preferred treatment.

 Cytomegalovirus

Cytomegalovirus (CMV) is a virus that infects the whole body. It most commonly appears as retinitis, which causes blurred vision and can lead to blindness. CMV can also affect other organs, and is capable of causing fever, diarrhoea, nausea, pneumonia-like symptoms and dementia.

 

CMV infection may be treated with drugs such as ganciclovir, valganciclovir and forscarnet.

 Herpes simplex and Herpes zoster

The usual symptoms of herpes simplex virus infection (HSV, which causes sores around the mouth and genitals) and herpes zoster virus infection (’zonal’ herpes or shingles) are not life-threatening but can be extremely painful. Both viruses are also capable of causing retinitis and encephalitis (which can be life-threatening).

 

Both herpes simplex and herpes zoster are usually diagnosed by simple examination of the affected area, and may be treated with drugs such as acyclovir, famciclovir and valacyclovir.

 Histoplasmosis

Histoplasmosis is a fungal infection that primarily affects the lungs but may also affect other organs. Symptoms can include fever, fatigue, weight loss and difficulty in breathing.

 

Disseminated histoplasmosis infection may be diagnosed using an antigen test, and can be fatal if left untreated. Treatment usually involves amphotericin B or itraconazole.

 Kaposi’s sarcoma

HIV-associated Kaposi’s sarcoma causes dark blue lesions, which can occur in a variety of locations including the skin, mucous membranes, gastrointestinal tract, lungs or lymph nodes. The lesions usually appear early in the course of HIV infection.

 

Treatment depends on the lesions’ symptoms and location. For local lesions, injection therapy with vinblastine has been used with some success. Radiotherapy can also be used, especially in hard-to reach sites such as the inner mouth, eyes, face and soles of the feet. For severe widespread disease, systemic chemotherapy is the preferred treatment.

 Leishmaniasis

Leishmaniasis is transmitted by sandflies and possibly through sharing needles. The most serious of its four forms is visceral leishmaniasis (also know as kala azar) which is characterised by irregular bouts of fever, substantial weight loss, swelling of the spleen and liver and anaemia (occasionaly serious). In its more common forms, leishmaniasis can produce disfiguring lesions around the nose, mouth and throat, or skin ulcers leading to permanent scarring.

 

Treatment of leishmaniasis with pentavalent antimony is relatively expensive, partly because of the cost of drugs but also because hospital admission is recommended (in milder cases, trained health workers may administer the injections or infusions at a patient’s home). If left untreated, visceral leishmaniasis is usually fatal.

 MAC

The germs of the mycobacterium avium complex (MAC) are related to the germ that causes tuberculosis. MAC disease generally affects multiple organs, and symptoms include fever, night sweats, weight loss, fatigue, diarrhoea and abdominal pain.

 

MAC should be treated using at least two antimycobacterial drugs to prevent or delay the emergence of resistance. Such drugs include clarithromycin, azithromycin, ethambutol and rifabutin.

 PCP

PCP is caused by a fungus, which was formerly called pneumocystis carinii but has now been renamed pneumocystis jirovecii. PCP is a frequent HIV associated opportunistic infection in industrialised countries but appears to be less common in Africa. The symptoms are mainly pneumonia along with fever and respiratory symptoms such as dry cough, chest pain and dyspnoea (difficulty in breathing). Definitive diagnosis requires microscopy of bodily tissues or fluids.

 

Severe cases of PCP are initially treated with TMP-SMX or clindamycin and oral primaquine. Mild cases can be treated with oral TMP-SMX throughout. With both of these regimens, toxicity (notably allergic-type reactions) often requires changes in therapy.

 

Prevention of PCP is strongly recommended for HIV-infected persons with very weak immune systems wherever PCP is a significant health problem for HIV-infected persons, and also after their first episode of PCP. The preferred drug is usually TMP-SMX.

 Toxoplasmosis

Toxoplasmosis (toxo) is caused by a protozoan found in uncooked meat and cat faeces. This microbe infects the brain and can cause headache, confusion, motor weakness and fever. In the absence of treatment, disease progression results in seizures, stupour and coma. Disseminated toxo is less common, but can affect the eyes and cause pneumonia.

 

Definitive diagnosis of toxo requires radiographic testing (usually a CT or MRI scan). The infection is treated with drugs such as pyrimethamine, sulfadiazine and clindamycin. Leucovorin may also be used to prevent the side-effects of pyrimethamine.

 Tuberculosis

Tuberculosis (TB) is a bacterial infection that primarily infects the lungs. Tuberculosis is the leading HIV-associated opportunistic disease in developing countries. For people who are dually infected with HIV and TB, the risk of developing active tuberculosis is 30-50 fold higher than for people infected with TB alone. And because mycobacterium can spread through the air, the increase in active TB cases among dually infected people means:

more transmission of the TB germ

more TB carriers

more TB in the whole population.

 

Tuberculosis is harder to diagnose in HIV-positive people than in those who are uninfected. The diagnosis of TB is important because TB progresses faster in HIV-infected people. Also, TB in HIV-positive people is more likely to be fatal if undiagnosed or left untreated. TB occurs earlier in the course of HIV infection than many other opportunistic infections.

 

A proper combination of anti-TB drugs achieves both prevention and cure. Effective treatment quickly makes the individual non-contagious, which prevents further spread of the TB germ. The DOTS (directly observed short course) treatment strategy recommended by WHO treats TB in HIV-infected persons as effectively as it treats those without the virus. A complete cure takes 6 to 8 months and uses a combination of antibiotics. In addition to curing the individual, it also prevents further spread of the disease to others. This is why treating infectious cases of TB has important benefits for society as a whole.

 

Isoniazid preventive therapy is recommended as a health-preserving measure for HIV-infected persons at risk of TB, as well as for those with latent TB infection.

HIV and nutrition are intimately linked. HIV infection can lead to malnutrition, while poor diet can in turn speed the disease’s progress. As AIDS treatment becomes increasingly available in the poorest parts of the world, critical questions are emerging about how well the drugs work in people who are short of food. Uncertainty also surrounds the role of vitamins and other supplements. And for those already receiving treatment, side effects such as body fat changes are a daily concern.

Understandably, HIV positive people and those who care for them are keenly interested in whatever might benefit their health. This article looks at what is known about the relationships between HIV and nutrition, and what this means for tackling the disease.
Effects of HIV on nutrition
Body changes
 AIDS is well known for causing severe weight loss known as wasting. In Africa, the illness was at first called “slim” because sufferers became like skeletons. Yet body changes are not only seen during AIDS; less dramatic changes often occur in earlier stages of HIV infection.

Whereas starving people tend to lose fat first, the weight lost during HIV infection tends to be in the form of lean tissue, such as muscle. This means there may be changes in the makeup of the body even if the overall weight stays the same.1

In children, HIV is frequently linked to growth failure. One large European study found that children with HIV were on average around 7 kg (15 lbs) lighter and 7.5 cm (3 inches) shorter than uninfected children at ten years old.2
What causes these changes?

One factor behind HIV-related weight loss is increased energy expenditure. Though no one knows quite why, many studies have found that people with HIV tend to burn around 10% more calories while resting, compared to those who are uninfected. People with advanced infection or AIDS (particularly children) may expend far more energy.3

But faster metabolism is not the only problem. In normal circumstances, a small rise in energy expenditure may be offset by eating slightly more food4 or taking less exercise.5 There are two other important reasons why people with HIV may lose weight or suffer childhood growth failure.6

The first factor is decreased energy intake or, to put it simply, eating less food. Once HIV has weakened the immune system, various infections can take hold, some of which can affect appetite and ability to eat. For example, sores in the mouth or throat may cause pain when swallowing, while diarrhoea or nausea may disturb normal eating patterns. Someone who is ill may be less able to earn money, shop for food or prepare meals. Stress and psychological issues may also contribute.

Secondly, weight loss or growth failure can occur when the body is less able to absorb nutrients – particularly fat – from food, because HIV or another infection (such as cryptosporidium) has damaged the lining of the gut. Diarrhoea is a common symptom of such malabsorption.
Effects of antiretroviral treatment

Current antiretroviral drug treatments control HIV infection and prevent severe wasting, as well as other AIDS-related conditions. Emaciated people tend to regain weight once they begin treatment, and stunted children start to grow faster. Nevertheless, the drugs do not eliminate wasting.

Studies have found that relatively small weight loss (between 5% and 10% over six months) is quite common among people with HIV who are taking treatment and not trying to lose weight.7 Although this might not seem like much, losses of this size have been linked to an increased risk of illness or death, as discussed below.

In addition, some antiretroviral drugs have been linked to a problem called lipodystrophy. Whereas HIV-related wasting tends to deplete lean tissue, lipodystrophy involves changes in fat distribution. Prolonged treatment is sometimes associated with losing fat from the face, limbs or buttocks, or gaining fat deep within the abdomen, between the shoulder blades, or on the breasts.

Antiretroviral treatment can also contribute to lipid abnormalities by raising LDL cholesterol, lowering HDL cholesterol, and raising triglyceride levels in the blood. This may result in higher risks of heart disease, stroke and diabetes.

Other side effects of antiretroviral treatment include insulin resistance, which can occasionally lead to diabetes.

Micronutrient deficiencies

Micronutrients are vitamins and minerals that the body needs to maintain good health. Researchers have found that people with HIV are more likely to show signs of micronutrient deficiencies, compared to uninfected people. Specifically they have found low levels of vitamin A, vitamin B12, vitamin C, carotenoids, selenium, zinc and iron in the blood of various populations.

Nevertheless, it must be noted that the evidence is not entirely conclusive. It is possible that HIV might affect the markers used to measure micronutrient levels more than it affects the actual amounts of micronutrients available in the body.8 Some studies suggest that antiretroviral treatment improves micronutrient status.9
Effects of nutrition on HIV
Disease progression

The links between HIV and nutritional status run both ways. It has long been known that weight loss strongly predicts illness or death among people with HIV. More recently it has been found that this applies even to people taking antiretroviral treatment. Losing as little as 3-5% of body weight significantly increases the risk of death; losing more than 10% is associated with a four- to six-fold greater risk.10

Various micronutrients have been linked to changes in the rate at which HIV infection progresses to AIDS. Low levels of vitamin A, vitamin B12, vitamin E and selenium seem to accelerate progression. Zinc and iron, on the other hand, appear to be harmful at high levels. Although zinc is essential for a healthy immune system, it also plays a crucial role in HIV’s replication cycle.11
Antiretroviral treatment

There is strong evidence that malnourished people are less likely to benefit from antiretroviral treatment. One study in Malawi found that patients with mild malnutrition (a low body weight for their height) were twice as likely to die in the first three months of treatment. For those with severe malnutrition the risk was six times greater than for those of healthy body weight.12 Researchers in Singapore have reported similar findings.13 This is not just an issue for developing countries; for example a study of people receiving antiretroviral treatment in Sydney, Australia found that one in three did not have access to nutritious food, and one in five said they regularly went hungry.14

Without food or the right nutrition, taking antiretroviral drugs can be so painful that people simply don’t. In a choice between taking pills with no immediate or obvious effect, and eating food to survive, food will almost certainly take priority every time. A health worker in Zimbabwe, where malnutrition is widespread, explained that taking antiretroviral drugs on an empty stomach is like digesting razor blades. The result is that many simply do not take them.15

Taking antiretroviral drugs on an empty stomach is like digesting razor blades.

In resource-poor countries, treatment in children is made more difficult because many children with HIV are severely malnourished. Very little is known about how best to treat such children, and in particular whether it is best to start antiretroviral treatment before or after nutritional rehabilitation.16 The World Health Organisation recommends treating the malnutrition first, but stresses that “further research on these matters is urgently needed.”17

The ways in which the body digests, absorbs and makes use of drugs are very similar to the ways in which it treats food, providing many opportunities for food-drug interactions. As explained later in this article, a number of foods and supplements are known to alter the effects of antiretroviral drugs. It is also possible that some micronutrient deficiencies may make the drugs less effective, or may worsen side effects.18
HIV transmission

The chance of someone transmitting HIV is linked to the amount of virus in their bodily fluids, which is known as the viral load. In theory, micronutrient deficiencies may increase viral load by enabling HIV to replicate faster, or by weakening the immune system. Similarly, someone whose immune system has been weakened by micronutrient deficiencies may be more likely to acquire HIV. Research in this area has, however, been largely inconclusive. The strongest evidence links low levels of retinol (the animal form of vitamin A) in women’s blood with increased rates of mother-to-child transmission. 19

Poor nutrition may also affect the spread of HIV in a very different way: by altering sexual behaviour. One study of two thousand people in Botswana and Swaziland found that women lacking enough food to eat were less likely to use condoms and more likely to engage in risky activities, such as exchanging sex for money or resources.20
Advice for HIV positive people

Dietary advice should be tailored to individual circumstances. However, in general the recommendations for people living with asymptomatic HIV infection are much the same as for everyone else, meaning a healthy, balanced diet.21 Only three differences are worth noting:
Because people with untreated HIV tend to burn more energy, the total number of calories should be around 10% higher than the usual guideline amounts, and up to 30% higher during recovery from illness. The balance of fat, protein and carbohydrates should remain the same.
Many experts recommend a daily multivitamin (usually without iron, except in menstruating women or people with iron deficiency).
The World Health Organisation recommends vitamin A supplements every 4-6 months for young children living with HIV in resource-poor settings.

HIV positive people suffering loss of appetite may need to make an extra effort to ensure they are eating enough. Helpful suggestions include eating several small meals per day, taking exercise to stimulate appetite, possibly mashing or liquidising food to ease swallowing, and seeking advice from a health provider or dietician.

If other approaches have failed to reverse wasting then doctors may recommend a liquid food supplement, an appetite stimulant, or resistance exercise to build muscle. Other possibilities include steroids and hormone treatments, though these can be expensive and have serious side effects.22
Do supplements help?
 Unfortunately, our knowledge of the effects of micronutrient supplements among people living with HIV is still rather patchy. This is partly because it hasn’t been treated as a major research priority, but also because of difficulties in conducting and interpreting scientific trials.

When scientists compare people who have chosen to take a supplement versus people who haven’t, they cannot be sure that the supplement is making the difference; for example, it could be that those taking the supplement tend to lead generally healthier lifestyles. Therefore the most reliable evidence comes from large trials in which scientists randomly choose who takes the supplement and who takes a dummy pill called a placebo.

Yet even the results of randomised trials must be treated with caution because diet and nutritional status vary widely. It is possible for a supplement that benefits one group of people to be ineffective or even harmful in another group.
Multivitamins

A trial involving a thousand HIV positive pregnant women in Tanzania found that daily multivitamins benefited both the mothers and their babies, compared to placebo. After four years, multivitamins were found to reduce the women’s risk of AIDS and death by around 30%. A large trial in Thailand also found that multivitamins led to fewer deaths, but only among people in the advanced stages of HIV disease. A third, smaller trial in Zambia found no benefits from multivitamins after one month of use.23

Based on these and other, less rigorous studies, many experts recommend multivitamins for people living with HIV, particularly those who are undernourished and have advanced disease. For example PEPFAR (the American government’s international AIDS initiative) supports the provision of micronutrient supplements to high-risk individuals with inadequate diets.24
Individual nutrients

When it comes to supplementing individual vitamins and minerals, the evidence is less clear. Few studies have found significant effects on HIV transmission, disease progression or death rates. The most interesting results have come from studies of vitamin A and zinc.

Vitamin A supplements have been found to reduce rates of illness and death among African children living with HIV. The World Health Organisation recommends vitamin A supplements every 4-6 months for all young children (6-59 months old) at high risk of vitamin A deficiency; this includes those born to HIV positive mothers in resource-limited settings. 25

In contrast, studies providing vitamin A to pregnant, HIV positive women have had mixed results. Two trials in South Africa and Malawi found no effect on mother-to-child transmission, but saw some other benefits for the infants. A third trial in Tanzania found that vitamin A supplementation had no beneficial effects, and actually increased the risk of mother-to-child transmission by 40%. The inconsistency of these results (perhaps due to differences in diet) means that vitamin A supplementation is not generally recommended for HIV positive, pregnant women. 26

Several studies have found that zinc supplementation reduces cases of diarrhoea among children in poor countries.27 However most trials have been conducted among HIV negative children outside Africa, and their results may not apply in all situations. One study in South Africa found that zinc supplements reduced bouts of diarrhoea among HIV positive children, without hastening the progress of their HIV infection.28 Other results from Africa have been mixed, with some studies finding no evidence of benefit.29

Zinc supplementation appears not to benefit adults living with HIV.30 31
Potential for harm

Some HIV positive people take a lot of supplements in the hope that at least some of them might be beneficial.32 This is not necessarily a sensible idea, however, because supplements can do harm as well as good. As an expert reviewer has noted:
“different doses may have different and even opposite effects, and the effect of the same dose may depend on baseline micronutrient intake or status… Furthermore, micronutrients often interact, so that the effect of a micronutrient supplement depends on the intake of other micronutrients.” - 33

Taking doses of vitamins far in excess of the recommended daily allowances – known as megavitamin therapy – is certainly not advisable. Megadose vitamin C, for example, has no proven benefit and can lead to diarrhoea, while too much vitamin A can cause a range of ailments including jaundice, nausea and vomiting.

Some foods, herbs and supplements interact with antiretroviral drugs, potentially increasing the risk of treatment failure or side effects. Harmful interactions have been observed between certain drugs and some of the foods promoted as nutritional therapy for people living with HIV, which otherwise may be beneficial as part of a balanced diet. Notable examples are St John’s Wort, African potato, Sutherlandia, garlic, vitamin C and grapefruit juice.34 35 36 It is important for HIV positive people to tell their doctors about any supplements they are taking.
Nutritional assistance

Because HIV and nutrition are so strongly linked, nutritional assistance is seen as an important part of the response to HIV. This may take the form of nutritional assessment, counselling, or food provision.
Nutritional assessment and counselling
 

Nutritional assessment helps HIV positive people receive appropriate treatment, care and nutritional support. Even in the poorest settings, according to the World Health Organisation:
“Screening for nutritional status and assessment of dietary intake should be included routinely in HIV treatment and care for adults and children.” - 37

In the US, the Department of Health and Human Services advises that, ideally, all people living with HIV should have access to the services of a registered dietician with expertise in HIV/AIDS.38 A dietician can assess the patient’s diet, lifestyle and nutritional status, and provide counselling and referrals as necessary.

Nutritional counselling may include education on various topics, including:39
Healthy eating
Achieving or maintaining a healthy body weight
Managing lipid abnormalities and lipodystophy
Managing dietary complications related to antiretroviral treatment
Managing symptoms that may affect food intake
Appropriate use of herbal and/or nutritional supplements
The role of exercise
Food safety (important for preventing opportunistic infections)
Providing food

Some programmes helping people living with HIV provide a limited amount of food to those most in need. For example PEPFAR money may be spent on food for the following groups, if funds cannot be obtained elsewhere:40
Orphans and vulnerable children born to HIV infected parents
HIV-positive pregnant and lactating women
Malnourished adults in antiretroviral therapy and care programmes 

Foods provided in resource-poor areas include peanut butter-based paste, milk, flour and vegetable oil, each fortified with micronutrients. Alternatively HIV positive people may be helped to set up vegetable gardens or animal rearing projects to improve their diet.

In some rich countries there are non-profit organisations that deliver meals to the homes of people who are ill because of HIV infection. Examples include Moveable Feast in Baltimore, USA, and The Food Chain in London, England.

Food provision is, however, not without its hazards. Organisations focused on combating HIV are wary of getting drawn into providing long-term food aid. In communities with widespread hunger, providing food only to HIV positive people may fuel discrimination, or even appear to reward people for becoming infected.

In remote areas with limited health facilities, restricted access to VCT, or targeted interventions to high risk groups, mobile VCT services should be considered.  Organizations providing mobile VCT should ensure that there are adequate follow-up services to provide post test care and support.  Creative and innovative approaches to providing follow up services may be required in rural settings.  In view of the expenses involved in outreach services performed in the health sector, a package of services such as family planning, child health monitoring and immunization can be provided on the same day/s that the VCT outreach activity is carried out (to target as many people as possible with several interventions).  Mobile VCT services should also be located where high-risk groups live and work (i.e. sex work areas, youth venues and military bases). Mobile VCT Guidelines need to be implemented to clarify: where mobile VCT should be conducted, who is responsible for setting it up and promoting it in the community (i.e. the Site Manager), how often mobile services should be provided and detailed follow up services to be provided (such as a 3 month return and referrals to post test care and support or establishment of a post test club in the community that would link to the central site).

Advantages

Disadvantages

·Increases the number of people who can access and receive VCT services ·Increases and promotes concepts of living positively with HIV/AIDS to a wider spectrum of community ·Fights stigma and discrimination associated with HIV/AIDS in a wider spectrum of society ·Improves early detection and prevention of STDs and AIDS related diseases and conditions ·Increases access to one on one HIV/AIDS prevention approaches, such as STIs, access to condoms (and counseling on the consistent, correct usage), risk reduction and behavior change, appropriate information and education about HIV/AIDS ·Promotes counseling and care at a community and grassroots level ·In is easier and a cost effective strategy for rolling out VCT services to a wider spectrum

·Needs a large budget as resources easily get overstretched: i.e. transport, personnel, maintenance, maintenance of cold chain storage for rapid test kits and blood samples, production of VCT materials ·As the number of mobile outreach communities increase in demand, the more deal there is to return to clients to provide support services and 3 monthly follow up (for window closers) ·Counselors are not always there in communities to fulfill needs ·Difficulties in accessing remote communities due to poor infrastructure, such as long distances and poor road conditions ·Insufficient counseling facilities and structures for optimizing privacy and comfort to the client ·Insufficient time spent with the clients as the counselor has to rush back to the central site to prepare for the next outreach services ·In case of problematic client case management, there is usually no established support systems such as other counselors or health professionals to help .Referral can be challenging as there are no immediate systems and referral locations can be far or out of reach to mobile clients

Operational requirements for Mobile VCT: 

1. Venues and Equipment

There are many options for providing mobile VCT services.  VCT can be offered out of a stocked van, in tents or in premises in the community (such as schools, churches, health centres, and other youth facilities or community/NGO centres).  Where cost is an option, it is recommended to work with the local community to provide VCT out of existing buildings with community support that will help with referrals and promotion of mobile VCT services.  Tents and vans are not recommended as they are expensive and are not ‘integrated’ into the community like working out of a local school or health centre.  They can be used where necessary (i.e. in very rural locations without available space) and where the budget permits.  Rapid testing should be utilized where possible to ensure results are available on the same day.  Where demand is high or distance is far from the central site, staff can stay the night to continue testing the following day (a budget should be allocated for such over night expenses).

1. Staffing

Staff should not travel to locations alone.  Where possible a male and female staff member should travel together.  Senior counselors or experienced staff should be the first to provide mobile VCT services and should train the newer team once systems are in place.  The number of staff will depend on the demand for services.  A receptionist should assist as well in the logistics and promotion of mobile VCT activities.  The number of staff is reduced for such services where a counselor is trained to perform HIV rapid tests (i.e. no need for a nurse or lab technician).  Staff from the central VCT site can be used if they are not at capacity.  Counselors should be hired only when necessary (i.e. if the central VCT site is always at capacity and cannot spare the counselors).  If the VCT site only has rooms for 3 counselors, a 4^th counselor should never be on site (1 counselor should be rotated through mobile VCT everyday). 

1. Promotion

Promotion of mobile VCT is very important and should not be neglected.  Mobile VCT services should be promoted throughout the community or directly to the target group the week before the service is provided.  Staff should work with the local community to gain support for mobile VCT and to promote the activities throughout their community.  They should be provided with leaflets, invitations and posters to promote the services (complete with the date, time and location).  The day of service provision there should be a banner set up outside of the location to show that VCT is offered in that location that day.   Relationships with the local community are very important in gaining support for VCT, in setting up local referral networks (required for each mobile VCT activity) and for promoting VCT.  Mobile VCT services should come back every 3 months to provide the opportunity for those in the window period and to follow up with those that were tested in the last mobile service.

Like most medicines, antiretroviral drugs can cause side effects. These unwanted effects are often mild, but sometimes they are more serious and can have a major impact on health or quality of life. On rare occasions, side effects can be life threatening.

Once started, antiretroviral treatment must be taken every day for life. Every missed dose increases the risk that the drugs will stop working. It is therefore vital that people receiving antiretroviral treatment get all the help they need to minimise the impact of side effects. Often there are several ways to lessen the harm, either byOther side effectsAbacavir hypersensitivity reaction
Variation in side effects

Antiretroviral drugs differ in how commonly they cause particular side effects. For example, efavirenz is the drug most associated with psychiatric symptoms, while protease inhibitors are more likely to raise levels of cholesterol and triglycerides. This should be considered when deciding which drugs to take.

Side effects vary from person to person and it is impossible to predict exactly how each individual will be affected. Some people take antiretroviral treatment for years with few problems, while others find the same drugs intolerable. Nevertheless some characteristics and pre-existing conditions (such as high blood pressure or hepatitis infection) are known to increase the risk from certain side effects. Doctors should assess these factors before advising patients on which drugs to choose.
Duration of side effects

Some side effects appear shortly after starting an antiretroviral drug and disappear within a few weeks as the body gets used to the new chemicals. This is often the case with nausea, diarrhoea and headache, for example.

Unfortunately other side effects – such as peripheral neuropathy (nerve damage) and lipodystrophy (fat redistribution) – tend to worsen over time and may never go away. Also some problems may not emerge until months or even years after treatment is started.
Preparing to start treatment

Those preparing to take antiretroviral treatment for the first time, or about to switch drugs, are well advised to learn a little about the most commonly associated side effects. This should help them deal with problems as soon as they arise.

Patients should also know how to spot the warning signs of more serious side effects that may require immediate intervention.
Reporting side effects

Because side effects are unpredictable, may occur at any time, and can be very serious, it is essential that all symptoms be reported during appointments with a doctor. Severe or unexpected events should be reported immediately.

Keeping a side effects diary is a good way to keep track of when symptoms occur, how often and how severely. If side effects are affecting quality of life or treatment adherence then this too should be reported.
Identifying the cause

Most side effects are not uniquely associated with a particular drug, and sometimes it can be difficult to identify the cause. HIV itself is capable of producing many of the symptoms that also occur as drug side effects. Other possible causes include opportunistic infections, stress, diet, and non-HIV drugs.

Patients should make sure their doctors are aware of all drugs they are taking. This means not only pharmaceuticals but also recreational drugs and complementary and alternative therapies. It may be that a side effect is due to one of these other substances, either directly or because of an interaction with the antiretroviral medication. The more information is shared with a doctor, the better equipped they will be to help.

Older people living with HIV may experience signs of ageing that could resemble certain side effects. For example, when people get older they might be more susceptible to increased fat in the abdomen, which could look similar to the changes that are caused by lipodystrophy.
Dealing with side effects

There may be several options for dealing with a particular side effect:
Wait for things to improve – especially if in the first few weeks of treatment
Address other possible contributing factors, such as diet, smoking or exercise
Change how the drug is taken (e.g. time of day, dosage, with or without food)
Try treating the side effect
Change one or more antiretroviral drugs

Switching drugs is often an effective way to reduce or eliminate a side effect when all other approaches have failed. If the viral load is undetectable then it is usually possible to switch only one drug without affecting treatment effectiveness or future treatment options. Otherwise, the entire combination may have to be changed.

Switching drugs is not without risks. As already mentioned, it can be difficult to identify the cause of a particular set of symptoms, and it may turn out that the rejected drug or drugs weren’t to blame after all. There is also a chance that the new medication may cause even worse side effects, perhaps forcing another switch. Changing drugs repeatedly will narrow future treatment options. It is important to weigh the possible risks and benefits before deciding on this course of action.

It is never a good idea to stop treatment without first consulting a doctor, as this may cause HIV to develop drug resistance.

Overview of antiretroviral drug side effects

Some of the side effects of antiretroviral drugs are described below, beginning with five of the most notable. This is not a complete list.
Diarrhoea

Diarrhoea is a common side effect of many antiretroviral drugs – especially protease inhibitors. Other possible causes include HIV, other infections and antibiotics. Sometimes an antiretroviral drug causes diarrhoea for only the first few weeks; in other cases this side effect lasts for as long as the drug is taken.
 

The severity of diarrhoea also varies. While even occasional attacks may be inconvenient and embarrassing, persistent diarrhoea can also lead to dehydration, poor absorption of nutrients and drugs, weight loss and fatigue.

Drinking plenty of fluids and replacing electrolytes will reduce the risk of dehydration. Electrolytes – such as potassium, sodium and magnesium ions – are essential to health and are depleted by diarrhoea. Ways of replacing electrolytes include oral rehydration salts (available from pharmacies), sports rehydration drinks (such as Gatorade or Powerade, though the high sugar may worsen diarrhoea), diluted fruit juices, soups, and homemade rehydration mixtures (8 level teaspoons of sugar and 1 level teaspoon of table salt per litre of water). Eating bananas, potatoes, fish or chicken will help to replace potassium.

Although it may not be enough to solve the problem, changing diet may reduce the severity of diarrhoea. Good advice includes:
Eat less insoluble fibre (raw vegetables, fruit skins, wholegrain bread or cereal, seeds and nuts)
Eat more soluble fibre (white rice, pasta, oat bran tablets, psyllium/isphagula)
Cut down on caffeine, alcohol and the sweetener sorbitol
Avoid greasy, fatty, spicy and sugary foods
Consider reducing dairy products in case of lactose intolerance
Consult a dietician

Over-the-counter medicines such as Imodium (loperamide), Lomotil (diphenoxylate and atropine) and calcium supplements are sometimes all that is needed to control diarrhoea. If these fail then doctors can prescribe stronger treatments, which may have to be injected. Sometimes nothing works, and changing drugs may be the best option.
Nausea and vomiting

Almost all antiretroviral drugs, as well as many other medications, can cause nausea (feeling sick) and vomiting, especially during the first few weeks of treatment. Although this side effect can reduce appetite, it is important to keep eating when possible, and to replace lost fluids and electrolytes (as with diarrhoea). The following measures may help:
Eat several small meals instead of a few large meals
Avoid spicy, greasy and rich foods; choose bland foods
Eat cold rather than hot meals
Don’t drink with a meal or soon after
Avoid alcohol, aspirin and smoking
Avoid cooking smells

Some antiretroviral drugs can be taken with food, and doing so may lessen their harmful effects. It may also be possible to alter drug dosage or frequency.

Various treatments, known as anti-emetics, are available for nausea and vomiting, some of which do not require a prescription. There is some evidence that ginger and peppermint may help against nausea.

If nausea and vomiting are severe, or occur with other symptoms such as dizziness, thirst, fever, muscle pain, diarrhoea, headache or jaundice, then this may indicate a more serious problem such as lactic acidiosis or pancreatitis. In this case medical attention should be sought as soon as possible.
Rash

Rashes often appear as a side effect of antiretroviral treatment. These may be itchy but are usually harmless and short-lived. However, severe rashes can occur with nevirapine, and more rarely with some other drugs. Any rash occurring during the first few weeks of treatment should be reported to a doctor immediately, as should any rash accompanied by fever, blistering, facial swelling or aches. A rash occurring with abacavir may indicate a very dangerous hypersensitivity reaction, as described later in this page.

Tips for coping with rashes include:
Avoiding hot showers or baths
Using milder toiletries and laundry detergents
Wearing cool fibres such as cotton, and avoiding wool
Humidifying the air
Trying moisturisers/emollients or calamine lotion

Antihistamine tablets can sooth rashes and are generally available without a prescription. However, because these may interact with antiretroviral medications, patients should check with their doctors before using them. More severe skin problems may be treated with steroids.
Lipodystrophy

Lipodystrophy involves losing or gaining body fat, often in ways that can be disfiguring and stigmatising. Three main patterns are seen:
Losing fat on the face, arms, legs and buttocks, resulting in sunken cheeks, prominent veins on the limbs, and shrunken buttocks.
Gaining fat deep within the abdomen, between the shoulder blades, or on the breasts.
A mixture of fat gain and fat loss.

Although lipodystrophy sometimes affects people with HIV who have not taken any antiretroviral drugs, it occurs more often among those receiving treatment. The condition is among the most common long-term side effects of combinations of drugs from the NRTI and protease inhibitor classes. It is particularly associated with stavudine, and to a lesser extent zidovudine. The precise causes of lipodystrophy remain unknown.

The treatments for lipodystrophy are sadly limited. Changing diet seems to make no significant difference, though resistance exercise (such as weight lifting) may improve the appearance of limbs by building muscle to compensate for lost fat. Any form of exercise will burn fat, which may make some parts of the body look better and others worse, depending on how fat has been redistributed. Aerobic exercise (such as running or swimming) tends to have more effect on the fat just below the skin than on the deep fat gained through lipodystrophy.

Doctors have tried using various medications, including human growth hormone, to treat lipodystrophy, but few have proved effective, and most have significant side effects. For people who have lost fat from the face, one option is injections of polylactic acid. This chemical (also known as New Fill or Sculptra) improves facial appearance by thickening the skin.

Switching antiretroviral treatment should stop the symptoms getting worse, but is unlikely to lead to much improvement once the condition has advanced.
Lipid abnormalities and the heart

Lipid abnormalities are another common side effect of some antiretroviral drugs – particularly protease inhibitors – and are often seen in people who also have lipodystrophy. Lipids are molecules of fat, cholesterol and related chemicals that have important roles in the body. Many factors including diet, smoking and exercise can affect the balance of these chemicals in the blood. Abnormal lipid levels can be harmful to health.

HIV positive people taking antiretroviral treatment commonly have high levels of a lipid called LDL cholesterol, low levels of HDL cholesterol, and high levels of triglyceride in the blood. Among HIV negative people such lipid abnormalities have been linked to greater risks of heart disease, stroke and diabetes.
 

The first steps in treating lipid abnormalities should be related to diet and lifestyle. General recommendations include giving up smoking, taking more exercise, cutting calories, eating less fat, and consuming more fibre and omega-3 fatty acids (found in oily fish and flaxseed). However, people living with HIV should seek expert advice on applying these guidelines. For example, cutting calories may jeopardise attempts to build muscle, while eating less fat is not necessarily a good idea for people taking certain protease inhibitors that require fatty foods to aid absorption.

Yet although diet and lifestyle changes should always be part of the strategy, they are often inadequate to correct the problem. Doctors may prescribe medications such as statins and fibrates to improve lipid levels, or they may advise switching treatment.

Alternative and complementary medicine is quite popular among people living with HIV. For example, around a half of HIV positive Americans report recent use.1 Many HIV positive people say they feel better after using alternative and complementary medicine, and it is likely that some of these treatments are indeed beneficial, although unproven according to conventional Western medicine.
What are alternative and complementary medicines?

Alternative and complementary medicine is the name generally given to those medical and health care systems, practices, and products that are not presently considered to be part of conventional Western medicine. Well known examples include herbal and other nutritional supplements, acupuncture, aromatherapy and homeopathy.
Alternative medicine is used in place of conventional medicine
Complementary medicine is used together with conventional medicine.

The more ancient forms of complementary and alternative medicine are also known as traditional medicine.
What are these therapies used for?
 

In relation to HIV, alternative therapies are most commonly used in areas where it is difficult to access Western medicine. In the absence of antiretroviral treatment, people seek other ways to delay the onset of AIDS, or to treat opportunistic infections. In sub-Saharan Africa, for example, traditional healers outnumber medically qualified doctors eighty-to-one.2 Traditional healers also usually provide immediate treatment, whereas clinics may have lengthy waiting lists and tests for eligibility.

Most people living with HIV in developed countries have ready access to antiretroviral therapy and conventional treatments for opportunistic infections. Because these treatments are so effective, there is less demand for alternative HIV medicine, except perhaps for addressing relatively minor infections, or when antiretroviral treatment cannot any longer be taken, for example because of drug resistance. Many instead look to complementary medicine as a way to prevent or relieve aids treatment side effects, some of which are not easily treatable with conventional medicine. There is also demand for complementary therapies that might boost immunity, relieve stress, or improve general health and wellbeing.

The people who distrust and avoid Western medicine for HIV include not only individuals, but also some governments. For example, senior politicians in South Africa have promoted unproven therapies while at times disparaging antiretroviral drugs. In Gambia, the president himself has treated patients with a herbal mixture he claims is an AIDS cure.
Do alternative and complementary therapies for HIV and AIDS work?

Western medicine embraces all approaches shown to be safe and effective in rigorous scientific trials. By definition, complementary and alternative medicine consists of therapies that are unproven, at least by the standards of Western medicine. Given the many therapies in existence, there can be little doubt that some of them do what they are supposed to. Many others are likely to be ineffective or can even be harmful. In the absence of good scientific trials, it is impossible to be certain which is which.
 

Still it can be argued that, from a scientific point of view, some things are more likely to work than others. Acupuncture, for example, appears to alter brain activity,3 and there is quite good evidence that it can help relieve post-operative nausea.4 5 Herbal medicines, too, are scientifically plausible: some 25% of modern drugs were derived from plants first used traditionally.6 Scientists have already identified one plant extract that acts like an antiretroviral drug;7 it is entirely possible that there are others.

At the other end of the scale are therapies that seem to defy the known laws of science. The most notorious of these is homeopathy, which few scientists see as credible. Homeopathic remedies are so diluted that none of the active ingredient remains.

Yet even if a medicine has no specific effects on an illness, this doesn’t necessarily mean it is worse than nothing. It is widely accepted that patients’ beliefs about a treatment, and the quality of the doctor-patient relationship, can influence health outcomes. This is what is known as the placebo effect. For example, one trial8 divided irritable bowel syndrome sufferers into three groups: the first received no treatment, the second underwent sham acupuncture (placebo), and the third got fake acupuncture plus a 45-minute consultation with a friendly doctor. The proportions of patients reporting moderate or substantial improvement were 3% (no treatment), 20% (placebo only) and 37% (placebo plus interaction). This effect may well account for some of the reported benefits of alternative and complementary medicine, as suggested in an editorial that accompanied the study:
“Is it possible that the alternative medical community has tended historically to understand something important about the experience of illness and the ritual of doctor-patient interactions that the rest of medicine might do well to hear? … The meanings and expectations created by the interactions of doctors and patients matter physically, not just subjectively.” 9

Even if it fails to ease symptoms, the treatment experience may have non-specific effects such as boosting self-confidence and relieving anxiety. Group therapies – such as yoga – are particularly good for meeting new people, who may be able to share knowledge of other treatment options.
Why is there such a lack of evidence?

Supporters of complementary and alternative medicine propose a number of reasons why their therapies have not been subjected to thorough testing. For one thing, major medical trials are highly expensive; if there is no prospect of a patent then there is less of an incentive to invest in research. Reliable, ethical trials also require a considerable amount of expertise. Many scientists with the necessary skills are reluctant to investigate therapies they think are implausible.

Yet it is misleading to suggest that no research takes place. The US government has an agency (NCCAM) dedicated to complementary and alternative medicine, and in 2008 allocated nearly $300 million to this field (around 1% of all federal funding for medical research). Potential HIV therapies investigated in government-sponsored trials include acupuncture, yoga, Reiki and distant healing.10

Although practioners of complementary and alternative medicine generally voice support for scientific research, they are often unwilling to accept negative findings. In 2005, medical journal The Lancet published the most thorough review of homeopathy trials ever conducted.11 Having analysed more than one hundred trials related to a wide range of illnesses, the authors concluded,
“there was no convincing evidence that homeopathy was superior to placebo.”

Homeopaths united in objecting to the methodology of both the trials and the review. 12 Some even suggested that placebo-controlled randomised trials (regarded as the gold-standard of medical science) were inappropriate for testing their system of healing.13
Potential for harm

Some forms of complementary and alternative medicine can cause harmful side effects. Words like “natural” and “traditional” are certainly no guarantee of safety.

Herbal or nutritional therapies (notably St John’s Wort) may also interact with other medications, making them less effective or worsening their side effects.

In general, herbal remedies and dietary supplements are not covered by the strict regulations that govern pharmaceutical drugs. Quality is inconsistent even among popular commercial formulations; tests have shown that the concentrations of active ingredients can vary greatly from the amounts listed on the packaging.14

The standard of complementary and alternative practioners is similarly uneven. Although some countries regulate certain types of practioners (such as osteopaths in the US and UK), many people practise without any formal qualifications.

Even if a therapy carries little risk of direct physical harm, it may still turn out to be a waste of time and money. Relying on alternative medicine instead of scientifically proven treatment can have very serious consequences. Once HIV has severely weakened the immune system, antiretroviral drugs are less likely to be life-saving.
Advice for those seeking complementary medicine

HIV positive people have a long history of taking control of their own healthcare decision-making. Those interested in complementary medicine can take steps to maximise their chances of success.

The Canadian AIDS Treatment Information Exchange (CATIE) suggests ten questions for assessing a new therapy:15
What am I hoping to get out of this therapy?
Do other HIV positive people use it?
Am I able to talk to any of these other people about their experiences?
Is there any research or additional information about this therapy?
What are the side effects, if any?
What sort of commitment do I have to make to use this treatment?
Where can I get this treatment, and will it be regularly available?
How much of this treatment is too much and what are the early signs of taking too much?
Does this treatment interact with anything else I’m taking?
How much does it cost?

Careful research is needed to answer these questions. Good sources of information include reference books on complementary medicine (available in many libraries), medical journals (which can be searched using the PubMed website), and the publications of reputable health organisations. Many AIDS organisations and other bodies, including NCCAM, will answer enquiries over the phone or online.

As already discussed, all forms of complementary medicine are unproven; each individual must make their own assessment of likely risks and benefits based on the available data. The most reliable evidence comes from large human trials – preferably randomised trials in which the treatment is compared to a placebo. Personal testimonies and laboratory findings should be given less weight, especially if they appear only in promotional material. Anyone who makes sensational claims (such as being able to cure many unrelated diseases with a single therapy), or who attacks conventional treatment, is probably a quack and best avoided.

If you have done your research and wish to try a complementary therapy, the next step is to talk to your personal doctor or HIV specialist. This is important because there may be a risk of interactions with other medications.

Some medical doctors have received training in complementary medicine. If your doctor lacks such expertise then it may be sensible to also find a complementary practioner, ideally one with experience in treating people with HIV. Help finding a practioner may be obtained from your doctor, an AIDS service organisation, or a professional body such as the Institute for Complementary Medicine in the UK, or the American Holistic Medical Association in the US. There are many practioners available; it is worth taking the time to find one you trust and feel comfortable with. Look for experience, qualifications and references you can verify.

When purchasing a herbal medicine or nutritional supplement, try to choose a reputable seller and manufacturer. Large, long-established companies are generally the most trustworthy because they have more to lose from selling poor quality goods. If possible, look for a company that submits its products for independent quality testing.

Having started a new treatment, it is a good idea to keep a diary of your symptoms. This will help you assess whether the therapy is having the desired outcome, or whether it may be causing unwanted side effects.
List of common complementary and alternative therapies

Complementary and alternative therapies can be divided into five main categories. The list below contains a few of the most popular examples.

Whole medical systems
Naturopathic medicine (mostly practised in the West; includes diet modification, herbal medicine, acupuncture and massage)
Traditional Chinese medicine (includes herbal medicine, acupuncture and massage)
Ayurveda (ancient Indian healing system; includes diet modification, herbal medicine, cleansing therapies, massage, meditation and yoga)
Homeopathy (most commonly prescribes extremely diluted solutions of natural substances)

Mind-body medicine
Relaxation techniques, meditation and visualization
Spirituality and prayer
Yoga (may incorporate spirituality, meditation and body postures)
Tai Chi (a Chinese martial art incorporating meditation and breathing exercises)
Qi gong (includes meditation, body postures and breathing exercises)
Aromatherapy (uses remedies derived from plants that are inhaled, applied to the skin or used internally)

Biologically based practices
Vitamins and minerals
Herbal remedies
Animal-derived extracts
Prebiotics and probiotics (aim to encourage the growth of beneficial microbes)

Manipulative and body-based practices
Massage
Chiropractic (invented in America; manipulates the spine)
Osteopathy (invented in America; manipulates the spine, joints and muscles; American osteopathic physicians are also trained in conventional medicine)
Shiatsu (traditional form of Japanese massage therapy)
Reflexology (invented in America; applies pressure to the feet, hands or ears)
Rolfing (named after American Ida Pauline Rolf; manipulates soft tissue)

Energy medicine
Acupuncture (involves inserting fine needles into the body)
Reiki (practioners claim to channel healing energy through their palms)
Therapeutic touch and distant healing (practioners claim to manipulate energy “biofields” with their hands)
Bioelectromagnetic-based therapies (involve unconventional use of sound, light, magnetism, and other forms of electromagnetic radiation)

What is AIDS?

AIDS stands for: Acquired Immune Deficiency Syndrome

AIDS is a medical condition. A person is diagnosed with AIDS when their immune system is too weak to fight off infections.

Since AIDS was first identified in the early 1980s, an unprecedented number of people have been affected by the global AIDS epidemic. Today, there are an estimated 33 million people living with HIV/AIDS.
What causes AIDS?

AIDS is caused by HIV.

HIV is a virus that gradually attacks immune system cells. As HIV progressively damages these cells, the body becomes more vulnerable to infections, which it will have difficulty in fighting off.  It is at the point of very advanced HIV infection that a person is said to have AIDS. It can be years before HIV has damaged the immune system enough for AIDS to develop.
What are the symptoms of AIDS?

A person is diagnosed with AIDS when they have developed an AIDS-related condition or symptom, called an opportunistic infection, or an AIDS-related cancer. The infections are called ‘opportunistic’ because they take advantage of the opportunity offered by a weakened immune system.

It is possible for someone to be diagnosed with AIDS even if they have not developed an opportunistic infection. AIDS can be diagnosed when the number of immune system cells (CD4 cells) in the blood of an HIV positive person drops below a certain level.
Can AIDS be treated?
 Antiretroviral treatment can prolong the time between HIV infection and the onset of AIDS. Modern combination therapy is highly effective and someone with HIV who is taking treatment could live for the rest of their life without developing AIDS.

An AIDS diagnosis does not necessarily equate to a death sentence. Many people can still benefit from starting antiretroviral therapy even once they have developed an AIDS-defining illness. Better treatment and prevention for opportunistic infections have also helped to improve the quality and length of life for those diagnosed with AIDS.

Treating some opportunistic infections is easier than others. Infections such as herpes zoster and candidiasis of the mouth, throat or vagina, can be managed effectively in most environments. On the other hand, more complex infections such as toxoplasmosis, need advanced medical equipment and infrastructure, which are lacking in many resource-poor areas.

It is also important that treatment is provided for AIDS related pain, which is experienced by almost all people in the very advanced stages of HIV infection.
Is there a cure for AIDS?

Worryingly, many people think there is a ‘cure’ for AIDS - which makes them feel safer, and perhaps take risks that they otherwise wouldn’t. However, there is still no cure for AIDS. The only way to stay safe is to be aware of how HIV is transmitted and how to prevent HIV infection.
How many people have died from AIDS?

Since the first cases of AIDS were identified in 1981, more than 25 million people have died from AIDS.
Why do people still develop AIDS today?

Even though antiretroviral treatment can prevent the onset of AIDS in a person living with HIV, many people are still diagnosed with AIDS today. There are four main reasons for this:
In many resource-poor countries antiretroviral treatment is not widely available. Even in wealthier countries, such as America, many individuals are not covered by health insurance and cannot afford treatment. 
Some people who became infected with HIV in the early years of the epidemic before combination therapy was available, have subsequently developed drug resistance and therefore have limited treatment options.
Many people are never tested for HIV and only become aware they are infected with the virus once they have developed an AIDS-related illness. These people are at a higher risk of mortality, as they tend to respond less well to treatment at this stage.
Sometimes people taking treatment are unable to adhere to, or tolerate the side effects of drugs.
Caring for a person with AIDS

In the later stages of AIDS, a person will need palliative care and emotional support. In many parts of the world, friends, family and AIDS organisations provide AIDS care in the home. This is particularly the case in countries with high HIV prevalence and overstretched healthcare systems.

End of life care becomes necessary when a person has reached the very final stages of AIDS. At this stage, preparing for death and open discussion about whether a person is going to die often helps in addressing concerns and ensuring final wishes are followed.
The global AIDS epidemic

Around 2.7 million people became infected with HIV in 2007 and in the same year 2 million people died from AIDS. Sub-Saharan Africa has been hardest hit by the epidemic; in 2007 around three quarters of AIDS deaths were in this region.
 

The epidemic has had a devastating impact on societies, economies and infrastructures. In countries most severely affected, life expectancy has been reduced by as much as 20 years. Young adults in their productive years are the most at-risk population, so many countries have faced a slow-down in economic growth and an increase in household poverty. In Asia, HIV/AIDS causes a greater loss of productivity than any other disease. An adult’s most productive years are also their most reproductive and so many of the age group who have died from AIDS have left children behind. In sub-Saharan Africa the AIDS epidemic has orphaned nearly 12 million children.

In recent years, the response to the epidemic has been intensified; in the past ten years in low- and middle-income countries there has been a 6-fold increase in spending for HIV and AIDS. The number of people on antiretroviral treatment has increased, the annual number of AIDS deaths has declined, and the global percentage of people infected with HIV has stabilised.

However, recent achievements should not lead to complacent attitudes. In all parts of the world, people living with HIV still face AIDS-related stigma and discrimination, and many people still cannot access sufficient HIV treatment and care. In America and some countries of Western and Central and Eastern Europe, infection rates are rising, indicating that HIV prevention is just as important now as it ever has been. Prevention efforts that have proved to be effective need to be scaled-up and treatment targets reached. Commitments from national governments right down to the community level need to be intensified and subsequently met, so that one day the world might see an end to the global AIDS epidemic.

The problems faced by AIDS orphans

1. Emotional impact

Children whose parents are living with HIV often experience many negative changes in their lives and can start to suffer neglect, including emotional neglect, long before they are orphaned. Eventually, they suffer the death of their parent(s) and the emotional trauma that results. They may then have to adjust to a new situation, with little or no support, and may suffer exploitation and abuse.

In one study carried out in rural Uganda, high levels of psychological distress were found in children who had been orphaned by AIDS. Anxiety, depression and anger were more found to be more common among AIDS orphans than other children. 12% of AIDS orphans affirmed that they wished they were dead, compared to 3% of other children interviewed.

These psychological problems can become more severe if a child is forced to separate from their siblings upon becoming orphaned. In some regions this occurs regularly: a survey in Zambia showed that 56% of orphaned children no longer lived with all of their siblings.

2. Household impact
 The loss of a parent to AIDS can have serious consequences for a child’s access to basic necessities such as shelter, food, clothing, health and education. Orphans are more likely than non-orphans to live in large, female-headed households where more people are dependent on fewer income earners.13 This lack of income puts extra pressure on AIDS orphans to contribute financially to the household, in some cases driving them to the streets to work, beg or seek food.

The majority of children who have lost a parent continue to live in the care of a surviving parent or family member, but often have to take on the responsibility of doing the housework, looking after siblings and caring for ill or dying parent(s). Children who have lost one parent to AIDS are often at risk of losing the other parent as well, since HIV may have been transmitted between the couple through sex.

3. Education

Children orphaned by AIDS may miss out on school enrolment, have their schooling interrupted or perform poorly in school as a result of their situation. Expenses such as school fees and school uniforms present major barriers, since many orphans’ caregivers cannot afford these costs.15 Extended families sometimes see school fees as a major factor in deciding not to take on additional children orphaned by AIDS.

AIDS orphans may also leave school to attend to ill family members, work or to look after young siblings. Even before the death of a parent, children may miss out on educational opportunities; research in Kenya suggests that children of HIV-positive parents are significantly less likely to attend school than other children.

Outside of school, AIDS orphans may also miss out on valuable life-skills and practical knowledge that would have been passed on to them by their parents. Without this knowledge and a basic school education, children may be more likely to face social, economic and health problems as they grow up.

4. Stigmatisation

Children grieving for dying or dead parents are often stigmatised by society through association with AIDS. The distress and social isolation experienced by these children, both before and after the death of their parent(s), is strongly exacerbated by the shame, fear, and rejection that often surrounds people affected by HIV and AIDS. Because of this stigma, children may be denied access to schooling and health care. Once a parent dies children may also be denied their inheritance and property. Often children who have lost their parents to AIDS are assumed to be HIV positive themselves, adding to the likelihood that they will face discrimination and damaging their future prospects. In this situation children may also be denied access to healthcare that they need. Sometimes this occurs because it is assumed that they are infected with HIV and their illnesses are untreatable.
“We should remember that the process of losing parents to HIV/AIDS for the children often includes the pain and the shame of the stigma and the fear that the disease carries in most our societies.” UNICEF representative Bjorn Ljunqvist19

5. Family structures

In African countries that have already suffered long, severe epidemics, AIDS is generating orphans so quickly that family structures can no longer cope. Traditional safety nets are unravelling as increasing numbers of adults die from HIV-related illnesses. Families and communities can barely fend for themselves, let alone take care of orphans. Typically, half of all people with HIV become infected before they are aged 25, developing AIDS and dying by the time they are 35, leaving behind a generation of children to be raised by their grandparents, other adult relatives or left on their own in child-headed households.

Traditional systems of taking care of children who lose their parents, for whatever reason, have been in place throughout Sub-Saharan Africa for generations. But HIV and AIDS are eroding such practices by creating larger numbers of orphans than have ever been known before. The demand for care and support is simply overwhelming in many areas. HIV reduces the caring capacity of families and communities by deepening poverty, through medical and funeral costs as well as the loss of labour.

The way forward

The way forward is threefold: firstly new HIV infections must be prevented so that children do not lose their parents; secondly access to antiretroviral treatment needs to be stepped up; and finally care must be provided for those children who are already orphaned. The rest of this page is devoted to issues around the care of AIDS orphans in Africa, but it is also important that HIV prevention is not forgotten. The situation of AIDS orphans is ultimately generated by adult deaths; until this problem is addressed the orphan crisis will continue.

1. Support for carers

In the early days of the AIDS orphan crisis, there was a rush by well meaning non-governmental organisations to build orphanages. Given the scale of the problem, though, this response was unsustainable, as the cost of maintaining a child in such an institution is much greater than other forms of care. Most people now believe that orphans should be cared for in family units through extended family networks, foster families and adoption, and that siblings should not be separated. Studies in sub-Saharan Africa have repeatedly demonstrated that growing up in a family environment is more beneficial to a child than institutional care, which should be considered a temporary option or a last resort.

Ultimately, though, the extended family can only serve as part of the solution to mass orphanhood if adequately supported by the state and the community, as well as other sectors of society.

The community needs to be supportive of children when they are orphaned, making sure that they are accepted and have access to essential services, such as health care and education. This means improving existing services and reducing the stigma surrounding children affected by AIDS so that they do not face discrimination when trying to access these services.

2. Keeping children in school

“My sister is six years old. There are no grown-ups living with us. I need a bathroom tap and clothes and shoes. And water also, inside the house. But especially, somebody to tuck me and my sister in at night-time.”

Schools can play a crucial role in improving the prospects of AIDS orphans and securing their future. A good school education can give children a higher self-esteem, better job prospects and economic independence. As well as lifting children out of poverty, such an education can also give children a better understanding of HIV and AIDS, decreasing the risk that they will become infected. Schools can also offer benefits to AIDS orphans outside of education, such as emotional support and care.

Unfortunately orphans may be the first to be denied education when extended families cannot afford to educate all the children of the household.

3. Empowerment for children

If AIDS orphans are as active members of the community rather than just victims, their lives can be given purpose and dignity. Many children already function as heads of households and as caregivers. They are a vital part of the solution and should be supported in planning and carrying out efforts to lessen the impact of AIDS in their families and communities.

4. Protection for the legal & human rights of orphans

Much can be done to ensure the legal and human rights of AIDS orphans. Many communities are now writing wills to protect the inheritance rights of children and to prevent land and property grabbing, where adults attempt to rob orphans of their property once they have no parents to protect their rights.
“You find that the parents have been productive and have left assets for the children but immediately after their deaths, the relatives squander everything. Those that are left without anything are just being used for the food rations.” Pelonomi Letshwiti, a social worker for Childline Botswana

Children orphaned due to AIDS may face exploitation in other areas of their lives as well. For instance, evidence suggests that there is a relationship between AIDS orphans in sub-Saharan Africa and increased child-labour.23

5. Meeting emotional needs

The physical needs of orphans, such as nutrition and health care, can often appear to be the most urgent. But the emotional needs of children who have lost a parent should not be forgotten. Having a parent become sick and die is clearly a major trauma for any child, and may affect them for the rest of their life.
“My sister is six years old. There are no grown-ups living with us. I need a bathroom tap and clothes and shoes. And water also, inside the house. But especially, somebody to tuck me and my sister in at night-time.” Apiwe aged 1324

Adakah obat untuk HIV?

Tidak. Tidak ada obat yang dapat sepenuhnya menyembuhkan HIV/AIDS. Perkembangan penyakit dapat diperlambat namun tidak dapat dihentikan sepenuhnya. Kombinasi yang tepat antara berbagai obat-obatan antiretroviral dapat memperlambat kerusakan yang diakibatkan oleh HIV pada sistem kekebalan tubuh dan menunda awal terjadinya AIDS.

Jenis pengobatan dan perawatan apakah yang tersedia?

Pengobatan dan perawatan yang ada terdiri dari sejumlah unsur yang berbeda, yang meliputi konseling dan tes mandiri (VCT), dukungan bagi pencegahan penularan HIV, konseling tindak lanjut, saran-saran mengenai makanan dan gizi, pengobatan IMS, pengelolaan efek nutrisi, pencegahan dan perawatan infeksi oportunistik (IOS), dan pemberian obat-obatan antiretroviral.

Apakah obat anti retroviral itu?

Obat antiretroviral digunakan dalam pengobatan infeksi HIV. Obat-obatan ini bekerja melawan infeksi itu sendiri dengan cara memperlambat reproduksi HIV dalam tubuh.

Bagaimana cara kerja obat antiretroviral?

Dalam suatu sel yang terinfeksi, HIV mereplikasi diri, yang kemudian dapat menginfeksi sel-sel lain dalam tubuh yang masih sehat. Semakin banyak sel yang diinfeksi HIV, semakin besar dampak yang ditimbulkannya terhadap kekebalan tubuh (immunodeficiency). Obat-obatan antiretroviral memperlambat replikasi sel-sel, yang berarti memperlambat penyebaran virus dalam tubuh, dengan mengganggu proses replikasi dengan berbagai cara.

• Penghambat Nucleoside Reverse Transcriptase (NRTI)

HIV memerlukan enzim yang disebut reverse transcriptase untuk mereplikasi diri. Jenis obat-obatan ini memperlambat kerja reverse transcriptase dengan cara mencegah proses pengembangbiakkan materi genetik virus tersebut.

• Penghambat Non-Nucleoside Reverse Transcriptase (NNRTI)

Jenis obat-obatan ini juga mengacaukan replikasi HIV dengan mengikat enzim reverse transcriptase itu sendiri. Hal ini mencegah agar enzim ini tidak bekerja dan menghentikan produksi partikel virus baru dalam sel-sel yang terinfeksi.

• Penghambat Protease (PI)

Protease merupakan enzim pencernaan yang diperlukan dalam replikasi HIV untuk membentuk partikel-partikel virus baru. Protease memecah belah protein dan enzim dalam sel-sel yang terinfeksi, yang kemudian dapat menginfeksi sel yang lain. Penghambat protease mencegah pemecah-belahan protein dan karenanya memperlambat produksi partikel virus baru.

Obat-obatan lain yang dapat menghambat siklus virus pada tahapan yang lain (seperti masuknya virus dan fusi dengan sel yang belum terinfeksi) saat ini sedang diujikan dalam percobaan-percobaan klinis.

Apakah obat antiretroviral efektif?

Penggunaan ARV dalam kombinasi tiga atau lebih obat-obatan menunjukkan dapat menurunkan jumlah kematian dan penyakit yang terkait dengan AIDS secara dramatis. Walau bukan solusi penyembuhan, kombinasi terapi ARV dapat memperpanjang hidup orang penyandang HIV-positif, membuat mereka lebih sehat, dan hidup lebih produktif dengan mengurangi varaemia (jumlah HIV dalam darah) dan meningkatkan jumlah sel-sel CD4+ (sel-sel darah putih yang penting bagi sistem kekebalan tubuh).

Supaya pengobatan antiretroviral dapat efektif untuk waktu yang lama, jenis obat-obatan antiretroviral yang berbeda perlu dikombinasikan. Inilah yang disebut sebagai terapi kombinasi. Istilah ‘Highly Active Anti-Retroviral Therapy’ (HAART) digunakan untuk menyebut kombinasi dari tiga atau lebih obat anti HIV.

Bila hanya satu obat digunakan sendirian, diketahui bahwa dalam beberapa waktu, perubahan dalam virus menjadikannya mampu mengembangkan resistensi terhadap obat tersebut. Obat tersebut akhirnya menjadi tidak efektif lagi dan virus mulai bereproduksi kembali dalam jumlah yang sama seperti sebelum dilakukan pengobatan. Bila dua atau lebih obat-obatan digunakan bersamaan, tingkat perkembangan resistensi dapat dikurangi secara substansial. Biasanya, kombinasi tersebut terdiri atas dua obat yang bekerja menghambat reverse transcriptase enzyme dan satu obat penghambat protease. Obat-obatan anti retroviral hendaknya hanya diminum di bawah pengawasan medis.

Mengapa ARV tidak siap tersedia?

Di negara-negara berkembang, hanya sekitar 5% dari mereka yang membutuhkan dapat memperoleh pengobatan antiretroviral, sementara di negera-negara berpendapatan tinggi akses tersebut hampir universal. Masalahnya adalah harga obat-obatan yang tinggi, infrastruktur perawatan kesehatan yang tidak memadai, dan kurangnya sumber pembiayaan, menghalangi penggunaan perawatan kombinasi ARV secara meluas di negara-negara berpenghasilan rendah dan menengah.

Sebanyak 12 obat-obatan ARV telah diikutsertakan dalam Daftar Obat-obatan Esensial WHO (WHO Essential Medicines List). Diikutsertakannya ARV dalam Daftar Obat-obatan Esensial WHO akan mendorong pemerintah di negara-negara dengan epidemi tinggi untuk lebih memperluas pendistribusian obat-obatan esensial tersebut kepada mereka yang memerlukannya. Sementara itu, meningkatnya komitmen ekonomi dan politik di tahun-tahun terakhir ini, yang distimulir oleh orang yang hidup dengan HIV/AIDS (ODHA), masyarakat sipil dan mitra lainnya, telah membuka ruang bagi perluasan akses terhadap terapi HIV secara luar biasa.

Perawatan jenis apakah yang tersedia ketika akses ARV tidak tersedia?

Unsur-unsur perawatan lain dapat membantu mempertahankan kualitas hidup tinggi saat ARV tidak tersedia. Unsur-unsur ini meliputi nutrisi yang memadai, konseling, pencegahan dan pengobatan infeksi oportunistik, dan menjaga kesehatan pada umumnya.

Apakah PEP itu?

Perawatan Pencegahan Pasca Pajanan terdiri dari pengobatan, tes laboratorium dan konseling. Pengobatan PEP harus dimulai dalam hitungan jam dari saat kemungkinan pajanan HIV dan harus berlanjut selama sekitar empat minggu. Pengobatan PEP belum terbukti dapat mencegah penularan HIV. Kendatipun demikian, kajian-kajian penelitian menunjukkan bahwa bila pengobatan dapat dilaksanakan lebih cepat setelah kemungkinan pajanan HIV (idealnya dalam waktu dua jam dan tak lebih dari 72 jam setelah pajanan), pengobatan tersebut mungkin bermanfaat dalam mencegah infeksi HIV.