3.3 Healthy soul or spirit. Know you have a choice:

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1 Healthy soul or spirit Know you have a choice: Other people may do things to you, but only you can choose how you view and respond to situations, including being infected with HIV. For example, if you think that you are a victim, then you will act, speak and feel accordingly. If, on the other hand, you want to be a long-term survivor, you need to act and think positively and focus on feeling alive. Either way, you have the right to choose how you live and you can change your mind any time you like. A positive attitude and will to live can overcome bodily illness. Find things to occupy your mind: Don't spend all your time worrying about the future and living in fear, because in so doing you are missing out on all the wonders and the beauty around you. Try and find things to take your mind off your problems: find a hobby, keep busy and spend time interacting with those around you. Talk to god or a higher being Experience has shown that spiritual wellbeing can be greatly improved by belief in, and communication with, a higher being. This can be a god or any other force or being that you feel influences your life and destiny. Living positively: Edna s story Edna is from Kenya and is 32 years old. She has been infected for 15 years and she is healthy and fit. When Edna was diagnosed as being HIV positive she was shocked because she had been faithful to her husband for many years and the diagnosis meant that he had had sex with other women while he was married to her. When she told her husband about the HIV test, he told her to leave, and he kept their two children. Her family also rejected her, as they did not know that you can not get HIV just from being near someone. Having no home, no family and no job, she left the village where she lived and moved to the city of Nairobi in order to find work. This was not easy and many nights she slept outside on the pavement. One day she was desperate and went to the local church to seek help. At first the people there did not want her to stay. However, a kind man gave her food and helped her to get a job at a fish factory nearby. Edna is a religious woman. She often prayed to God, asking why he was punishing her in this way, and she was angry at God for doing this to her. One night, as she was praying, a voice in her head told her that God loved her. She was most surprised, as she thought that God was punishing her! Over the next few months she began to think about why these things were happening. Was it punishment, or was it some kind of test? Eventually she came to the conclusion that God does not hurt his children and that people were the ones causing her pain. When she read the Bible, it said that God loved all his creatures. This was another surprise to her, as this meant that God loved HIV as well! How was this possible? She did not understand how this could be the case, but accepted that it might be true. She had a discussion with the virus in her body and came to an agreement that she would not kill it if it did not try to kill her. Edna says that this was an important event for her, as she no longer felt as if there was an enemy in her body, and began to feel as though she could learn something from it. Over the next few years she realised that there were many people with HIV and AIDS who were being rejected by their families and communities. She began to speak to people about her experiences and offered help where she could. She started making an effort to always keep busy (except for Sundays) and she tries to eat as many fruit and vegetables as possible. She does not smoke or drink alcohol.

2 87 She now says that it was her faith in God that has helped her, because she knows that she is never alone and is always loved. She does not care what people think of her anymore - she knows that she is following the path that God intends for her. She says that she has also faced all the things she feared the most - being rejected, losing her family and children, illness and death and says that she has little to fear anymore. She says that she is not concerned for the future, as she knows that her life will end when her task is done, and not before. She is happy and has even remarried. Source: N Orr, Positive health, 2003 Living positively: David s story David has been HIV positive for almost 20 years and is one of the longest-surviving (and healthy) people with HIV in the world today. He was born in Zambia in He got infected with HIV in about 1981 and in became ill in His doctor told him that he had six months to live, and that he should not come back to the doctor's office, as the other patients would object. When he became ill in 1983 he had already developed the symptoms of what is today called AIDS. He had lost over one third of his body weight, had severe lung infections, and his immune system was almost completely destroyed. He says that the first thing that he thought of after being told he was going to die was that he might as well have some fun before he died! He also did a rather strange thing: he bought his coffin, planned his own funeral and then bought a house! Over the next year or so, many of his friends died of AIDS. He was depressed and decided to have a talk to the virus in his body. He said to the virus that he accepted the fact that the virus could kill him. However, he also told the virus that he could kill it by killing himself. So he negotiated a deal with the virus: 'If you do not kill me, I will not kill you.' Over the next few years his health gradually improved. After about four to five years his body (immune system) returned to a normal state of health and has remained that way ever since. David says that, although he is not religious in any way, he has strong spiritual beliefs and he says he talks to God almost every day. He also says that the most important thing he ever did was to change his attitude about himself and other people. He says that problems at school caused him to need other people's approval a great deal, and that when he decided to recognize his own value, he stopped seeking other people's approval. This has changed his life. It meant that he began to tell people what he felt and thought, even when the other person may not have liked what he had to say. He says that he has to be honest, as telling lies to protect other people's feelings is not good for him or for them. He does not do any from of exercise, but people who know him will tell you that he is almost constantly busy doing things, never sitting still! He does not follow any specific diet, but makes sure that he eats well. David also says that it was important for him to deal with his fears of death and dying and that he is grateful that he did this early on in his infection. David says that he has tried not to take life for granted, and he now makes a point of watching the sun rise and set, and taking some time to appreciate nature, music and all the good things in life. When he wakes up in the morning he thanks God for breathing and for another day to do more things. Source: N Orr, Positive health, 2003

3 88 4 Antiretroviral therapy Section objectives: 1. Explain what antiretroviral drugs are and how they work. 2. Give three reasons why drug adherence and resistance are important in determining the effectiveness of ARV treatment. 3. Outline the state of HIV vaccine development. There are a number of antiretroviral drugs available which can greatly improve the health and quality of life of people suffering from AIDS. These should not be seen as an alternative to positive living, but should be viewed as an additional weapon for combating the effects of the virus. 4.2 What are antiretroviral drugs? Antiretroviral drugs (ARVs) are medicines that reduce the level of HIV (viral load) in the blood. ARVs stop the reproduction of the virus within the body and kill off the viruses present in the blood. Such treatment reduces the viral load to very low or even undetectable levels, allowing the number of CD4 cells to increase. This allows the immune system to recover. Once the immune system has recovered, a person on ARVs will posses normal levels of immunity and is unlikely to contract any opportunistic infections. There are a number of different ARVs on the market and new drugs are continuously being developed. ARVs that many people have heard of include: Azidothymidine or Zidovudine (AZT or ZDV); Nevirapine; and, Lamivudine. It has been found that where only one drug is taken (monotherapy), HIV manages to quickly develop resistance to that one drug, so that it eventually becomes ineffective. Two drugs have also been found to be insufficient to control the virus for long periods of time. A combination of three drugs is now used. This is known as triple therapy or Highly Active Antiretroviral Therapy (HAART). ARVs can dramatically reduce the amount of the virus in the blood and can help to return the body to normal levels of immunity. They are NOT A CURE. If treatment is stopped, the viral load will begin to increase. This is because, although ARVs kill the viruses that are present in the blood, they are not able to reach and kill viruses embedded in the body's organs. If treatment is stopped, these viruses will quickly begin reproducing again. ARVs thus represent a lifelong commitment once you have started taking them you generally need to continue taking them for the remainder of your life. Starting and then stopping ARVs can result in drug resistance (see section 4.3, below). 4.2 When are ARVs used? ARVs are used in a number of different contexts. As already mentioned, PEP involves taking a short course of ARV treatment to help prevent HIV transmission in cases of occupational exposure or sexual abuse (see Module 2). A limited dose of ARV medication is also administered to prevent mother to child transmission (MTCT) of HIV. This involves administering a dose of ARVs to the mother just prior to her giving birth and to the baby within three days of its birth. This reduces the mother's viral load, and therefore the likelihood of her passing the virus to her baby, and helps to prevent the virus from taking hold in the baby's body. Finally, ARVs are used as a long-term therapy to maintain the health of people living with HIV/AIDS.

4 89 Where ARVs are used in long-term therapy, they are generally only prescribed when immune system has weakened to the point where it is no longer able to properly protect them against infection. As explained in Module 1, it may take many years before a person with HIV reaches this point, and a healthy diet, lifestyle and attitude can help to prolong this period. Doctors often disagree about when the best time to begin ARV therapy is. Respected guidelines, however, suggest that you should consider treatment if you have either suffered serious opportunistic infections, or have a CD4 count of 350 or below. It is advisable to seek treatment before your CD4 count falls below 200, as a weakening of the immune system to this level may result in irreversible health problems. 4.3 Drug adherence and resistance 'Adherence' is the extent to which people take all the medication they are supposed to when they are supposed to. Research has shown that unless people take ARV medication correctly at least 90 percent of the time, the medication becomes ineffective and treatment is likely to fail. ARVs, like many other medications, need be taken at the same time each day. When this is is up to you. The important thing is that the time between taking your pills is kept the same, so that the level of medication in your blood remains constant. This is due to something called a 'half life'. Medications are designed to be eliminated from the body after a certain period of time in order to avoid the drugs building up in the body and becoming poisonous. For example, many sleeping pills are eliminated from the blood stream two to three hours after they are consumed. The length of time required for the body to eliminate medicines from the blood stream is what is referred to as the 'half life'. This varies from medicine to medicine. Where the level of medicine must remain constant in the body, it needs to be taken regularly in order to 'top up' the amount of medication in the blood as previous doses are removed. A failure to consistently take your medication at the same time each day may result in the levels of medication in the blood dropping, reducing its effectiveness. This may not only allow the virus to begin reproducing again, it may also result in the virus becoming resistant to the drugs used. HIV is constantly reproducing and changing itself. Where the reproduction of the virus is suppressed, the likelihood of the virus changing itself is also reduced. If the virus is able to resume reproducing, the virus can change itself so that a particular medication no longer has any impact. If this happens, the medication used will have to be changed, and possibly made stronger, potentially increasing the experience of side effects. If this happens repeatedly, there is also a chance that ARVs may cease to be a viable treatment option. 4.4 The availability of ARVs The last few years have seen enormous progress in the development and use of antiretroviral drugs (ARVs), yet many of the benefits have bypassed developing countries. Key issues in this regard have been: The cost of ARVs. ARVs are very expensive. The price has steadily fallen from over 1000 US dollars per person per year in the late 1990s, but ARVs have remained unaffordable for most individuals and governments.

5 90 Inadequate facilities to role out ARV treatment in the developing world. The successful role out of ARVs requires sufficient health care workers with the knowledge to prescribe and monitor the use of ARVs, laboratories to do the necessary testing and analysis, and the administrative infrastructure to ensure that there is a steady supply of treatment. These elements are lacking in many developing countries. Concerns over the taking of ARVs in resource poor settings. People on ARVs often have to take many pills several times a day and it is very important that they take all the pills at the correct time and don't skip pills. ARVs can also have side effects, such as headaches, skin rashes, nausea and diarrhoea and often need to be taken with specific kinds of food in order to limit these effects and help them work better. Many people have expressed concern that in settings where people are poorly educated and stigmatised, they fail to take their pills properly, or may be unable to take their medication with the necessary foods. The rollout of ARVs has been very slow, with the World Health Organisation (WHO) estimating that only a relatively small proportion of people are presently receiving ARVs worldwide. Only a few countries in the region, provide ARVs through their public health system. Some of the larger private sector companies in the region provide ARVs to their employees, as do some public sector institutions. For the most part, however, ARV treatment has been confined to those that can afford to buy their own, or are fortunate enough to be on medical aid schemes that cover it. This is changing. The price of some ARVs has dropped to less than 150 US dollars per person per year. The fall in drug prices, together with international emphasis on the provision of treatment, has resulted in increasing numbers of donors and governments committing to the rollout of ARV treatment. The Global Fund for HIV/AIDS, Tuberculosis and Malaria has also granted substantial funds to several countries in the region to support treatment programmes. Treatment is also getting simpler, with multiple antiretrovirals being combined into one pill that can be taken twice a day. This greatly increases the likelihood of proper adherence. These pills, together with a growing acknowledgment that people in resource poor settings can and do adhere to treatment as long as proper information and support is provided, are likely to encourage the implementation of ARV programmes. 4.5 Vaccines A vaccine is a medicine that permanently protects you from getting a particular illness. A vaccine does not cure an illness, but it prevents you from either contracting it or suffering its effects. As yet no one has been able to develop a vaccine for HIV. Three main types of HIV vaccine are being investigated: Preventive vaccines: aim to stop the virus establishing itself in the body after exposure and includes vaccines that aim to reduce the likelihood of the virus being transmitted through sexual intercourse. Therapeutic vaccines: to prevent HIV from progressing to AIDS. Perinatal vaccines: to prevent the mother to child transmission of HIV. These vaccines would hopefully provide a more effective version of current prevention of mother to child transmission activities, which use antiretrovirals to prevent transmission from mother to child. It is unlikely that an effective vaccine will be discovered within the next ten years, although increasing levels of funding are being made available to speed up research. Even when vaccines eventually become available, they may be only 50 to 70 percent effective. Vaccines will have to be used in addition to other prevention methods, including the later start of sexual activity, reduced number of partners and consistent and correct condom use (see Module 5 for more on prevention).

6 91 5 Support networks Section objective: Identify major sources of support for people living with HIV/AIDS People either infected or affected by HIV need to receive emotional and physical support. It is vital that you tap into the growing number of resources available. You will need: Someone to talk to about how you feel. This can be a friend or family member, a counsellor, or anyone else you feel comfortable with. Remember that such a person may not be able to provide solutions to your problems. They need only to listen and to provide emotional comfort. Someone (or more than one person) who can provide you with the practical information and assistance you may need from time to time to deal with problems. For example, it is a good idea to see a doctor every few months to check one's health and to provide necessary information. Support networks and mechanisms may include the following: Family Families can provide emotional, social, financial and physical support and can provide vital love and compassion. Severe and terminal illness can be emotionally, physically and financially draining for families. It is important that families also tap into resources, such as support groups, home-based care services and non-governmental organisations (NGO s). Families should also try and access any financial support available, including public grants and programmes and, where they exist, police pension, housing and disability benefits. Home and community care Home and community care is often the only means of support for people in the late stages of their illness. Home and community care usually takes the form of a group of volunteers who regularly visit the sick in a specific community. They usually assist their carers in looking after the sick and provide information as well as material, emotional and physical support to both the sick person and their family. Such volunteers can usually refer you to other sources of assistance, such as hospices or NGOs. These services can provide vital information to both HIV positive people and their families and valuable opportunities for increasing awareness of HIV and its prevention. They can also play an important role in helping people to prepare for the care of orphaned children and increasing knowledge of legal rights regarding property and inheritance. Hospitals and clinics Hospital and clinic staff are able diagnose HIV and perform, or refer, individuals to appropriate counselling, education and follow-up care. Many are also in a position to refer individuals and their families to home and community based care initiatives, support groups and other sources of assistance. They are also best placed to treat infections or, where necessary, refer people for additional treatment.

7 92 Peer educators Although the main purpose of peer educators is to train and educate colleagues on issues surrounding HIV/AIDS prevention and awareness, they also play a vital role in supporting people infected and affected by HIV/AIDS. Peer educators are trained to listen and to give emotional support. They can also refer you to other sources of help. Support groups There are often a range of support groups available for people living with HIV/AIDS and their families. These may be run by institutions, such as the police services, hospitals, NGOs, religious groups, or private individuals. Such groups generally bring together a group of people with similar experiences and needs to provide each other with valuable emotional support, information and advice. Table 7: Other support networks

8 93 Notes 1 N Orr, Positive Health, published by Metropolitan, Further information can be obtained at ( 2 Dr M Biot, Medecines Sans Frontieres, presentation at the second Metropolitan HIV/AIDS Conference, Maputo, 4th 6th November,