Treatment for AIDS. What do ARVs do? There is a lot of confusion about these medicines which fight AIDS. Who do we believe?

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1 1 Treat for AIDS There are now medicines which can treat AIDS. They are called antiretrovirals, or ARVs for short. ARVs do not cure HIV! But they can stop a person with HIV from dying of AIDS. ARVs only work if you use them properly. ARVs do not work for everybody. They are already working well for many people. There is a lot of confusion about these medicines which fight AIDS. Who do we believe? For the next eight weeks we will give you more information about ARVs. We will tell you: What ARV drugs are, and what they do in the body understanding the side effects of ARVs when to start taking ARVs understanding how ARVs can stop working after a while (drug resistance) sticking to the treat Some people say ARVs are Other people say ARVs save lives. dangerous poisons. They say It is true that many people who ARVs will make you sicker and were close to dying of AIDS are kill you quickly. (It is true that healthy again thanks to ARVs. (In ARVs can cause serious health rich countries, HIV is no longer a problems if they are not used disease that kills, but rather a properly! But this is also true of health condition you can treat many other medicines we use and live with, like diabetes or all the time.) high blood pressure. This is because people with HIV in rich countries can get ARVs easily.) Our govern now gives ARV treat to those who need it. In this time of HIV and AIDS, it is important to know the truth about ARVs. What do ARVs do? HIV grows in the blood, killing the important CD4 If the person stops taking the ARVs, the HIV will cells which help the body to fight sicknesses. ARVs get strong again. The new strong HIV knows ARV are medicines which stop HIV killing CD4 cells medicines. HIV can disguise itself and escape from and growing in the blood. This means the blood the ARVs. This means the ARVs do not work well gets strong again and can fight off the infections anymore. that make people with HIV sick. HIV stays in the blood but the ARVs keep it weak, protecting CD4 cells. Next wee eek: The stages of HIV, CD4 cells and the viral load

2 The stages of HIV infection 2 Doctors talk about four stages of HIV infection. Stage 1 Stage 2 Stage 3 Stage 4 Few or no signs of illness It usually takes many years to go from Stage 1 to Stage 4. Skin problems, colds and flu, losing weight Very thin, diarrhoea, fever, thrush, lung infections like pneumonia and TB Counting CD4 cells and HIV in the blood Serious lung infections and thrush in the foodpipe (oesophagus); TB outside the lungs (such as in the glands) brain infections; bad diarrhoea, cancers (Karposi s Sarcoma). All these illnesses together are AIDS. Doctors do blood tests to find out what stage of HIV infection a person is at. They measure the number of CD4 cells in the blood, this is called a CD4 count. They also measure the amount of HIV in the blood, called the viral load. A person with a high viral load usually has a low CD4 count. This means that the HIV is taking over he body and is killing CD4 cells fast. A normal CD4 count for an adult is from 500 to 1200 cells per millilitre. A healthy person with a strong immune system has a lot of CD4 cells in his or her blood. A person who has a weak immune system has not enough CD4 cells in his or her blood. A CD4 count of lower than 200 means the person is getting to Stage 4, that is AIDS. The road from HIV to AIDS Isigaba sokuqala Isigaba sesibili CD4 count Isigaba sesithathu Isigaba sesine People with HIV who go to the clinic or hospital regularly get used to these tests. They need to understand what CD4 count and the viral load tests mean. When a person starts taking ARVs, doctors use these Viral load AIDS tests regularly to check how well the ARVs are working. Kusukela eminyakeni ewu-5 kuya kwewu-10 Next week: How ARV medicines change the viral load and the CD4 count

3 How ARVs change the viral 3 load and the CD4 count Last week we wrote about the amount of HIV in the blood (viral load) and the number of CD4 cells in the blood (CD4 count). These blood tests show which stage of HIV or AIDS a person is at. The HIV virus cannot make more viruses by itself. After it gets into our blood in our body, it takes over the white blood cells called CD4 cells. It uses the CD4 cells to make more HIV viruses. The CD4 cells then die. Without enough CD4 cells, the body can t fight germs anymore. Inside your body, in the CD4 blood cells, HIV makes 10 billion new HIV viruses every day! ARVs work here, in the CD4 cell, to stop HIV from making more viruses. H IV HIV How ARVs work ARVs stop HIV from making more HIV viruses inside the CD4 cells. The body can now make more CD4 cells and be able to fight off germs again. Some HIV viruses hide quietly in the body, not making new viruses. ARVs only work when HIV is making new viruses. This means we can never get rid of all the HIV viruses in the body. When someone takes ARVs the viral load (amount of HIV in the blood) goes down very quickly. It can go down from thousands of viruses in the blood to less than 400 in six months. The CD4 count goes up more slowly, from less than 200 to more than 500. How HIV learns to fight ARVs HIV is a clever virus. If we do not take our ARVs every day at the right times, HIV soon learns to disguise itself (develops resistance). The ARVs don t recognise the HIV anymore, so they do not work anymore. HIV can make millions of new HIVs in your blood very quickly. If you forget to take your ARV medicine once, the HIV has a chance to make millions of new viruses in that short time. Many of these new HIVs will be the ones that the ARVs do not recognise. Anyone who takes ARVs must understand this very well. We will write more about drug resistance later. Next week: The different types of ARV medicines

4 The different types of 4 ARV medicines There are three different types of ARV drugs which fight HIV in different ways. Because it is easy for HIV to disguise itself and resist the ARV drugs, people must take the three different types of ARV drugs all at the same time. This is called HAART (Highly Active Antiretroviral Therapy) or triple therapy. There are two groups of HAART ARV drugs that the govern uses in South Africa. Healthworkers call these groups regimens regimens. These are the names of the drugs in the two regimens: 3TC or Lamivudine d4t or Stavudine Group 1 or Regimen 1 Efavirenz (or Nevirapine, which is safe for women who may want to fall pregnant) ARV drugs must be taken every day at the right time. Miss only a few doses and clever HIV learns to fight these medicines. ARVs have different names, depending on which drug company makes them. The names given on this page are the generic names of the contents of the drugs. (Other kinds of drugs also use different names for the same thing. For example, paracetamol is sold by different drug companies as Panado, Painamol, Tylenol, or Dolorol.) Group 2 or Regimen 2 (for those whose HIV resists Regimen 1) AZT or Zidovudine ddl or Didanosine Lopinavir with Rittonavir Side effects when medicines make us feel sick Medicines that are meant to help us sometimes give us other problems. For example, aspirin (Disprin) can cure a headache, but it can also damage your stomach. The bad effects that some medicines have are called side effects. ARVs do have side effects. Most of these are not very serious, but some can be dangerous. Everyone who starts taking ARVs needs to know what the side effects are. If they have any problems they must go back to the doctor or clinic straight away. Your health worker People who take ARVs must visit the same health worker regularly. This means the health worker knows all about the patient and their problems. This makes it easier to sort out problems like side effects. It is also nicer for the patient and the health worker if they know and trust each other. If a patient sees a different health worker each time they come to the clinic, there is more chance for confusion about what medicines the patient is taking, and what blood tests have been done, and so on. Next wee eek: The different side effects of ARVs

5 The side effects of ARVs 5 These are the important side effects to know about: 1.. ARVs change the way other medicines work. Medicine for TB and epilepsy do not mix well with ARVs. Tell your doctor about ALL the other medicines you take, even headache pills, flu medicine, vitamins, immune boosters and herbal/ traditional medicines. 2.. Sometimes people taking ARVs can t get rid of lactic acid in the body Too much lactic acid in the body is a serious problem, called Lactic Acidosis. Signs are nausea, vomiting, and stomache pain, feeling very tired, short of breath and losing weight. A blood test shows if Lactic Acidosis is the problem. The doctor will treat the Lactic Acidosis, and give you different ARV drugs. 3.. Skin rashes Skin rashes are usually caused by Nevirapine. Usually the rash goes away by itself. If the person also gets sores inside the mouth, they must go to the doctor straight away. 4.. Changes in the blood Some drugs, especially AZT, can make your blood weak. 5.. Liver damage Some drugs, especially Nevirapine, can damage the liver. 6.. Changes in the body s fat After taking Lopinavir with Ritonavir for a long time, a person can get too much fat in their blood. They get a fat tummy but have thin arms, legs and faces. Their bones may get thinner and weak. People taking ARVs must have regular blood tests to check for the more serious side effects. Many of the side effects, like nausea and bad dreams, will go away after a few weeks of starting ARV treat. If the side effects are too bad to live with, go back to the healthworker to report your problems with the medicines before you stop taking the ARVs. 7. Sore feet Some people get a burning pain in their feet. This happens especially with ddi and d4t. 8. Nausea Lost of people who take ARVs feel nauseous. Usually this gets better after a month or two. 9. Crazy Dreams Efavirenz can cause strange dreams. Some people feel as if they are going crazy. Next week: When to start taking ARVs

6 When to start taking 6 ARV drugs Starting ARVs is never an emergency (something to do in a rush), even if you are ill with AIDS. You need to take time to learn about the medicines, understand all about the treat and prepare yourself ally. ARV drugs must be taken every day at the right time. Miss only a few doses and clever HIV learns to fight these medicines. Remember the stages of HIV infection: Stage 1 Few or no signs of illness Stage 2 Skin problems, colds and flu, losing weight Stage 3 Very thin, diarrhoea, fever, thrush, lung infections like pneumonia and TB Stage 4 Serious lung infections, TB outside the lungs, thrush in the foodpipe (oesophagus), brain infections (toxoplasmosis; cryptococcal meningitis), very bad diarrhoea, cancers (like Karposi s Sarcoma). All these illnesses together are AIDS. It is not good to start taking ARVs too soon, at Stage 1 or Stage 2. These are the reasons why: In the early stages of HIV infection, long before AIDS, ARVs do not make much difference to a person s health. A person has to take these drugs every day without missing a dose for the rest of their life. The longer a person takes ARVs, the more chance there is that the HIV will get used to these medicines and become resistant, so the ARVs stop working. This is called drug resistance, when HIV disguises itself so that the ARVs do not recognise it and can t stop it making new viruses in the body. Remember, every time a person forgets to take their ARV medicines at the right time, the HIV gets more chance to resist the ARVs by making many new resistant viruses! Starting ARVs too early means more time to get serious side effects. The best time to start taking ARVs is when your CD4 count is less than 200, or you are at the beginning of Stage 4 of HIV disease (full-blown AIDS) you also feel ready, knowing you will take these medicines forever. Next wee eek: More about why ARVs can stop working (drug resistance)

7 When ARV drugs don t work 7 Understand drug resistance ARV medicines stop HIV making more HIV in the CD4 cells of the blood. When ARVs work well, there is soon there is very little HIV left in the body. But HIV is a very clever virus. It can change itself, so that after a while the ARVs do not work well anymore. The HIV learns to fight back against the ARVs. This is called drug resistance. Every time a person on ARVs forgets to take their medicine on time, the HIV has a chance to escape the ARVs and makes more viruses in the blood. Remember, without ARVs, HIV makes 10 billion new HIV viruses in your blood every day! H IV HIV In week 4 of this series we told you about the different groups of ARVs, called Regimen 1 and Regimen 2: Each of these regimens (groups of drugs) are made up of three different ARVs that fight HIV together in different ways. This is called HAART Highly Active Anal Therapy (sometimes called Triple Therapy). How to make sure your ARV medicines work! If you can prevent the HIV in your blood from making more HIVs in your blood, then it is much harder for the virus to change and learn to fight against the drugs. The only way to keep the HIV very weak is to take every dose of the ARVs on time, for the rest of your life. More than 95% of the tablets must be taken for the treat to work well. This means if a person misses more than one dose every ten days, he or she has a much greater chance that the ARVs will fail. Most people on ARVs do take their treat on time if the mixture of drugs they take is not too complicated, and they really understand why it is so important to take the medicine on time everyday. Make sure you are taking HAART that is, there are three drugs in your Regimen, not just two. (A few doctors still give only two ARV drugs to start with, which means there is more risk of drug resistance. ) When when HIV becomes resistant to the first group of drugs (Regimen 1), the person can get a new group of ARVs, Regimen 2, to try and weaken the the HIV again. Regimen 1 is much easier to take than Regimen 2. Regimen 1 drugs also work better than Regimen 2. So you should try very hard to take the first group of ARVs correctly. But because the HIV has learned to fight one group of ARVs, it is now easier for it to learn to fight the next group of ARVs. Next wee eek: Tips for remembering to take your medicines on time

8 How to remember to 8 take the medicine Last week we told you how important it is to take every dose of ARV medication, to make sure the HIV in your body does not get a chance to make more HIV that can fight against ARVs. Here are some ideas that may help you or your loved ones on ARVs remember to take their medicine correctly. Tell the people you live with that you have HIV and are on ARV treat When the people you live with don t know that you have HIV, it is very difficult to take your treat properly. If you hide away your medicines, and take them secretly, you will forget to take them on time. If your family or housemates know about your ARV treat, they can help you to remember to take it. They can also support you in many other ways. Make packs of the pills you must take each day For example, if you take pills twice a day, get two small different coloured bottles. One bottle is your morning pill bottle, and the other is your evening pill bottle. Make sure they are dry and clean. After you have taken your last lot of pills at night, put the pills for the next day into the bottles. If in the evening the morning pill bottle is full, you know that you forgot to take your pills! Use an alarm Set the alarm on your watch or your cell-phone to go off at the time you need to take your pills. After each dose, set the alarm to ring again at the time for the next dose. Take your pills with your daily activities Match your pill-taking time to a daily activity, such as brushing your teeth, or watching your favourite TV show. Take one dose at that time every day. Be careful to remember at weekends or when you go away from home. Use a calendar Make a calendar that shows each day and the times you need to take your medicines. Tick the calendar each time you take your medicine. Support from others Find a pill friend, someone who sees you every day or who will SMS you every day to remind you to take your medicines. This could be a family member, a friend, or someone you see at work everyday. Don t choose a pill friend who lives far away. The pill friend can come with you when you first get the ARVs, to learn about when you must take them. Never run out of pills Make sure you get more pills at least a week before your pills are finished. That way you will never run out. Running out and missing a few doses in a row gives HIV a good chance to learn to resist the medicines. Talk to your healthworker If you often forget to take your pills at the right time, talk to your nurse or doctor about the problem. They may be able to give you more ideas of ways to take your medicines regularly.

9 For the past eight weeks, this series has told you about antiretroviral medicines (ARVs), which can stop people with HIV from getting sick with AIDS. Testing positive for HIV no longer needs to feel like a death sentence. ARVs can give a person with HIV many more years of healthy living. 9 We told you about: the four stages of HIV infection how ARV medicines change the viral load and the CD4 count in the blood the different groups of ARV medicines (Regimens 1 and 2) side effects (when the medicines make you feel sick) when to start taking ARVs why ARVs sometimes don t work (drug resistance) tips to help you take ARVs correctly This is the end of the series on ARVs. If you want to get the whole series from us (in Zulu or in English) call (033) , or arbucklek@ukzn.ac.za The information in this series is adapted from Living Positively with HIV and AIDS: A Wellness Course developed by Dr Liz Tomson ARVs give us a good reason to be tested for HIV. AIDS can be treated. But to get treat with ARVs, you must know your HIV status. Important things to know about ARVs Taking ARVs is a lifetime commit. Once you start taking them, you should never stop. Not all people with HIV need ARVs immediately. It is not good to start taking ARVs too soon. Start taking ARVs when: your CD4 Count is lower than 200 you show signs of having AIDS (always sick with many illnesses that don t get better) you feel ready to take ARV medicines forever Where to get help Clinics test for HIV, and can do a CD4 count to find out whether you need ARVs. They can refer you to a clinic or hospital that offers ARVs. Edendale Wellness and Care Centre offers courses and support that help you to stay healthy. They have the contact details of all the community support groups. (033) Lifeline offers counselling, HIV tests and information about resources for people living with HIV/AIDS (033) ARV drugs must be taken every day at the right time. Miss only a few doses and clever HIV learns to fight these medicines. People on ARVs should take three different medicines together. This is HAART (Highly Active Anal Therapy, or triple therapy ) and it gives you the best chance of successful treat. You need to visit the same health worker regularly, to keep track of your treat. When taking ARVs you need regular blood tests and check ups.