TB in Our Lives. A book of information sheets for people living with TB, support groups and clinics

Transcription

1 TB in Our Lives A book of information sheets for people living with TB, support groups and clinics

2 TB in our lives comes at a very appropriate time. In countries with high rates of HIV TB was already known to be the main cause of death. This has now taken on unprecedented proportions. Added to this already explosive health scenario, comes a a new strain of TB - drug-resistant TB, which has the reputation of being virtually impossible to treat. Despite a strong and tightly-controlled TB programme managed by Cape Town City Health in Khayelitsha currently we know of well over 200 cases of drug-resistant TB cases. This prefigures what is unfolding slowly across Southern Africa: a rapid increase in the numbers of drug-resistant strains of TB, driven by the HIV epidemic. While our hospitals and TB units are already unable to cope with the existing numbers of patients, they will be stretched beyond breaking point when faced with treating drugresistant TB. In some communitiestb/hiv co-infection has reached between 60 and 70%, which means that the majority of TB cases are presenting in patients who are HIV-positive. This translates into different TB symptoms, different diagnostic needs and a much more aggressive disease. ARV provision has been through a major policy shift in recent years. The National Strategic Plan foresees that by 2011, more than 80% of ARVs will be delivered by nurses in primary health care settings. While this decentralisation is happening in the treatment of HIV and AIDS, it would not make sense to introduce avirtually opposite treatment strategy to tackle drug-resistant TB.It would be such a waste of resources to fight both epidemics in parallel, and not utilise theexisting community tools such as treatment literacy and support groups - that have developed around ARV programmes. This handbook comes into this political background at a critical time.it refers to a process of self-education that has to find a sensitive balance between patient rights, such as access to comprehensive treatment, and responsibilities like the adherence to treatment The handbook also has to play a role in education, support and prevention. Many will argue that the principles of ARV management are not transferrable to TB management, largely becausemainly DR-TB transmission is much more insidious, unpredictable and potentially damaging for the community than HIV. This has forced TAC and other community activists to revise and adapt their stategy. It means reexamining TAC s role and responsibilities in supporting affected individuals, tracing defaulters and infection control education. If the stigma around HIV has been considerably reduced in some communities where TAC is active, drug-resistant TB comes is surrounded by an enormous stigma that is fuelled by misunderstandings on infection mechanisms, alarming media reports and irrational political decisions. The World Health Organisation predicts that TB diagnostic in smear-negative patients, treatment of co-infected patients and the management of drugresistant TB will be among the main health challenges our communities will face in the future. We will only succeed by creating TB resistant, friendly communities, that are aware of TB mechanisms and transmission risks, who understand universal precautions and are supportive of people infected with DR-TB.This handbook is a critical step in that direction. Dr. Eric Goemaere MSF South Africa 20/10/2007

3 TB in our lives A book of information sheets for people living with TB, support groups and clinics

4 This handbook was put together by TAC Treatment Literacy staff and activists. This handbook is part of a series originally conceived by Sipho Mthathi. Thanks to Eric Geomaere, Gilles Van Cutsem and Polly Clayden. Treatment Action Campaign (TAC) Tel: (021) Fax: (021) info@tac.org.za Website: Many thanks to Juta for permission to use the talking people at the bottom of each page. 2 Edited and proofread by : Shireen Essof & Karena du Plessis. Design and layout by: Designs4developement Printed by: Saltyprint Illustrator: Nielen Marais Any part of this publication may be copied or reproduced without permission, provided that TAC is acknowledged and the reproduced parts are distributed for free.

5 Contents Note to readers of this handbook 6 Introduction 1 Infosheet 1: What is DOTS? 7 Infosheet 2: The science of Tuberculosis 10 Infosheet 3: Tuberculosis: Infection and disease 13 Infosheet 4: Diagnosing tuberculosis 18 Infosheet 5: Tuberculosis Treatment 27 Infosheet 6: Drug resistant tuberculosis 40 Infosheet 7: TB and HIV 48 Infosheet 8: What needs to be done? 54 Glossary 62 3

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7 Note to readers of this handbook My name is Fikile Boyce, I am a volunteer of TAC in Kwa Nobuhle Branch in the Nelson Mandela Metropolitan. I go for VCT twice a year. As a health activist, I feel fortunate to have been empowered by TAC, by providing me with knowledge and being able to make informed decisions. I tested positive for TB, after a smear-positive test. I could have contracted TB in my work or through contact with an infectious TB contact person. I didn t have any TB symptoms except for night sweats. When I did a sputum test for TB, one specimum was negative, and the other was positive. I could not have started treatment immediately but due to insistence of a doctor I know, I started treatment immediately, as a positive result means there is active tuberculosis. After taking Rifafour for two months, I was tested again. The result came back negative and I was started on Rifinah, which I will take for four months; I will finish my TB treatment on the 05 October During my treatment I have found that: 1. TB patients are not educated about the importance of taking medication and the side effects. 2. There is no follow up for testing immediate family members who have been exposed to TB. 3. The TB protocol does not cater for people with a single smear-positive result. 4. TB and HIV should be managed at a single service point in case there is coinfection. 5. In Cape Town, I got Rifafour from a chemist during the health workers strike as the clinic was closed. 6. The green card/passport must always be carried around by TB clients. 7. All the people of NM could have TB so let us all test for TB and HIV and save our lives. 5

8 TAC advocates, some of us who live with HIV and some of us who have had TB, wrote this handbook. It is part of the Treatment Action Campaign s treatment literacy programme for South Africa. We wrote this handbook because we learned from HIV that information about care and treatment helps save lives. We know this from our own experiences and from that of our families, friends and our communities. You can read more about HIV and treatment in our other publications HIV in Our Lives and ARVs in Our Lives. In this handbook we talk about TB and its prevention, care and treatment and how TB relates to HIV. We talk about how TB attacks our bodies, how it is treated and the things we can do to help fight TB in our communities. We try and explain things in a way that makes sense and that is not too technical so that you can go on and explain about TB to others. How to use this handbook Just like when we learned about HIV, this handbook may be the first information you read about TB. You may be reading it because you have found out you have TB. You may be reading it because someone in your family has TB, or you may need to learn because of what TB is doing to our communities. Do not be put off if all this information seems overwhelming. Do not be discouraged if you can not take it all in at once. There are many ways you can use this handbook. You can read the handbook in sections. You can use it for education in your workshops and support groups. You can present some of the information and then make a test or an exercise to see what the group learned. This way you can use it as a tool to help other advocates learn about TB. We hope it will make you ask lots of questions about TB. We can all learn from talking to other advocates or to healthcare workers. Sometimes we can find the answers to our questions on the Internet. We can all learn to do our own research! Always try and find out about things you do not understand Some of the words in this handbook may be new to you, so we have incuded a glossary on page 62. The more we understand about TB and treatment, the better our own treatment will work. The more we can help others to make their treatment work, the more we can do to combat TB in South Africa. 6

9 Introduction Tuberculosis (TB) is an ancient infectious bacterial disease. TB has been known to humans for thousands of years. Signs of the disease were found in Egyptian mummies. It has been around for a long time in South Africa. Right now South Africa is in the middle of a tuberculosis (TB) epidemic. TB is out of control in South Africa South Africa has one of the highest incidence rates of TB in the world. This has increased dramatically as the HIV incidence has grown, with the number of TB cases doubling since The high rate of HIV has made TB increase to epidemic proportions. TB and HIV together are more destructive than each disease on its own. Sometimes TB and HIV are refered to as a bad marriage. TB is one of the most common opportunistic infections for people with HIV. TB progresses faster in people who are HIV-positive. TB is the leading cause of death in people living with HIV and AIDS in the country. People with TB are more likely to be infected with HIV and AIDS. One study showed that adults in Cape Town with WHO AIDS clinical stage 3 and 4 were most at risk of TB. In South Africa 55% of patients who test positive for TB are also HIV-positive One study showed 42% of children with TB were co-infected with HIV. Among people between years old, 60% of all TB cases are in HIV-positive people. The rate of TB in people with AIDS is 500 times higher than that of the general population. TB in Khayelitsha According to the World Health Organisation (WHO), if more than one in every 100 people is sick with TB, it means it is an emergency. In Khayelitsha, a township near Cape Town, one in every 70 people has tested positive for TB. The high rate of HIV in South Africa has made TB increase. 1

10 INFOSHEET 6 TB is especially bad in the Western Cape, where it is colder and wetter than in other parts of the country. However, TB is bad in every province. According to the WHO s latest world report, South Africa ranks ninth on the list of the 22 countries most affected by TB. South Africa has one of highest incidence rates of TB world wide (558 per 100,000). TB cases have doubled since The latest figures from Statistics South Africa - the organisation looking at deaths in South Africa show that the number of people dying of TB has nearly tripled since This is the case in all of South Africa s nine provinces. Why has our TB response failed? At present, only around 20% of those who need ARV treatment receive it. In order to control the rise of TB, HIV infection must also be curtailed and HIV-positive people must be treated. According to the South African Health Review (2004) a lack of management capacity, poor management systems and inadequately trained and motivated staff at district levels were key reasons why the TB response has failed. This is made worse by the shortage of healthcare workers trained to handle TB or HIV. Despite promises over the past five years, the Department of Health has failed to integrate TB and HIV services. Community activism is needed to achieve this. The South African TB Control Programme is hindered by inadequate TB facilities in the country. Eleven percent of public health facilities do not even stock TB medicines. This means that many TB patients go untreated. Fixing this requires political will. Government must acknowledge the seriousness of the HIV epidemic if it is to make progress against TB. Access to all essential drugs including TB drugs and tests at all primary care facilities remains a top priority for activists, health professionals, health managers, health departments and communities. For one thing, a comprehensive health human resource plan for the country is overdue. Also, traditional healers and community health workers need to be trained to support the management of HIV and TB. We talk about all these things in this handbook. Despite old tests and medicines, TB can be prevented, treated and cured. 2 TB and HIV services must be integrated.

11 TB crisis factors Below are some of the factors contributing to the spread of TB in South Africa. There are very important social factors like housing, which affect infection rates. The social factors relate to the conditions, that increase our risk of catching TB. There are also other factors relating to how diseases are managed by our health system. Housing TB spreads easily in overcrowded, unventilated conditions. The bacterium also thrives in damp and dirty conditions. The bacteria are airborne and pass between people when someone coughs or sneezes. Living in the same house with someone with undiagnosed, untreated, active TB is not good, especially if you share a room and/or a bed. Young children are particularly at risk. The huge problem of overcrowding and inadequate housing in South Africa contributes to the spread of TB. Poverty Malnourished or undernourished people (people who do not have enough food to keep their bodies strong and healthy) are at risk of getting TB. This is because the body is weakened and more likely to get infections. Poverty is an important factor in the rate of TB infection. Unemployment is extremely high in South Africa and is greatest in rural areas especially among women. Currently, however, the fastest growing unemployment rate is among people in cities. There is a lack of social security, so the unemployed and their families may have no means of support. One in every 10 South Africans is malnourished. Many social factors contribute to the spread of TB. 3

12 INFOSHEET 6 Food insecurity and poverty also have a serious effect on treatment adherence (taking our medicines properly so they have the best chance of working and making us better). People find it difficult to take medicines on an empty stomach or forego medicines for food. People reliant on disability grants are often vulnerable with no alternative source of income. For example, those in state hospitals lose their social welfare benefits when they are in hospital. So sometimes people won t go to hospital and stop taking their treatment. Those who are in temporary work or who have to pay to get to the clinic often cannot afford to go there regularly for treatment. Temporary housing is often the only available housing e.g. in informal settlements. People relocate and don t leave addresses at clinics and there are no follow-ups on their treatment. Records are not kept, so no one knows if someone s treatment was completed. Alcoholism and illegal drugs Alcohol can make those who drink a lot more vulnerable to TB infection. There is widespread alcohol and illegal drug use in this country. These kinds of addictions can make people forget to take their medicines and therefore not get better. Alcohol and illegal drugs can also damage our livers. Prisons There is a TB epidemic in our prisons. Prisoners are at high risk for TB and are among the highest risk groups in the population. Prisons are overcrowded with inadequate ventilation. Many prisoners have HIV, which frequently goes untreated. Even if a prisoner is diagnosed with TB often they cannot access proper treatment. One prisoner, who died in custody at Westville Corrections Centre (and was a client of the AIDS Law Project) had repeated episodes of TB that were not treated properly. Mines In the South African gold mines the incidence of TB has more than doubled since the TB epidemic started. Miners are mainly migrant 4 Government departments must work together to overcome TB and HIV.

13 INFOSHEET 6 workers who live in single sex hostels (typically with men sharing two or three to a room). Miners only return home to their families a few times a year. Conditions down the mines contribute to TB and poor lung health. There is also a very high prevalence of HIV among miners. HIV and AIDS All around the world, TB has become worse in places where there is a lot of HIV. As HIV has become more common, TB has also become more common. This is because untreated HIV weakens the immune system. People with weak immune systems are more likely to become sick with TB. If people are sick with TB and not treated quickly, they can infect friends, family and other people in their community. Of the 44 million people living with HIV and AIDS, 12 million are co-infected with TB. The number of TB cases is expected to double over the next decade because of HIV. Communities with lots of untreated HIV get more TB! Poverty and HIV The rate of HIV infection is very high in informal settlements. Poor women are often vulnerable, dependent and unable to take control of their own sexual health e.g. demand condoms. A recent TAC Women s Survey indicated that poverty and unemployment were major factors in becoming HIV-positive for women. Once again grant issues come into play. In South Africa we loose grants when our CD4 count rises above 200. This means that people are often reluctant to continue ARV treatment. Improvements in poverty alleviation will help fight HIV infection. People with jobs are much more in control of their lives. Poverty fuels TB and HIV. 5

14 INFOSHEET 6 TB prevention We can prevent TB. Simple things we can all do make a big difference. We can cover our mouths when we cough preferably with a hankerchief or cloth. This is called cough hygiene. We can open windows to let fresh air in, particularly in places that are crowded. We can educate ourselves and our communities about TB with tools like this handbook! We can set up TB clubs, groups of people living with TB. These have been successful in other places in Africa to help people with TB education, adherence to TB medicines, testing for TB, and giving people with living with TB a place to share their problems. We can make our health facilities safer. People with HIV are sharing clinic and hospital waiting rooms and wards with people with undiagnosed TB. The risk for TB transmission in healthcare settings for people living with HIV, healthcare workers and support staff, is extremely high. Yet most healthcare settings do not have basic TB prevention measures in place. We can train our healthcare workers. All those working in health facilities, including doctors, nurses, administrators, clerks and cleaners need to be trained in TB prevention, and on how to protect themselves against the disease while at work. Government has a responsibility to see that TB prevention becomes a priority in all healthcare facilities. 6 We can prevent TB.

15 What is DOTS? INFOSHEET 1 DOTS has demonstrated serious limitations in its nearly decade-long existence particularly since the HIV/AIDS pandemic has completely transformed the landscape of TB care. - Médecins Sans Frontières Directly Observed Treatment, Short-course (DOTS) was launched in 1994 by the WHO to treat TB. People on DOTS are observed every weekday for six months. This is obviously very inconvenient and difficult for patients to adhere to, especially if they have to be observed at a clinic. Many people co-infected with HIV who take antiretrovirals find it difficult to accept that their treatment must be supervised. This is because there is a different model for antiretroviral treatment, which is life-long. DOTS was intended to be used only with people who have tested TB-positive using the smear test. This ignores the many HIV-positive people with active TB who nevertheless test TB-negative. However, DOTS has been effective in rich countries with low HIVprevalence rates. DOTS vs the adherence model Like TB treatments, antiretrovirals have side-effects. They also make people who are sick feel better in a short period of time. Antiretrovirals have to be taken for life, rather than just six months. Yet people are much more likely to take their antiretroviral treatment properly than take their TB treatment properly. Why? The reason is that a different approach has been used for antiretroviral treatment. For example, people on antiretroviral treatment at the Médecins Sans Frontières (MSF) site in Khayelitsha choose their own treatment supporter; they are not observed on a daily basis by a health professional at the clinic. This means they can continue living a normal life. They are also encouraged to learn about the science and treatment of HIV, as well as to join support groups. This patient-centered approach is different from DOTS where TB patients are given far less responsibility. We need to improve the DOTS approach. 7

16 INFOSHEET 1 Strengths and Criticisms of DOTS STRENGTHS DOTS, has been relatively effective. More than 17 million infected with TB have been treated between DOTS has an overall success rate of 80% meaning 8 out of every 10 people treated under DOTS have been cured of TB. DOTS supporters can help in communities with shortages of healthcare workers In 1994, DOTS was the most realistic approach for the WHO to use at the time for TB diagnosis and treatment. DOTS has delivered significant successes compared to non-dots strategies. With the use of DOTS supporters, the DOTS programme strengthens community involvement in healthcare. DOTS focuses on those who are smearpositive and most infectious. They also help to identify socio-economic challenges of households WEAKNESSES DOTS needs a lot of resources in order to be effective. DOTS does not often work in places that are poor and have severe shortages of healthcare workers. The DOTS success rates are lowest in Africa, in areas with high rates of HIV and in areas with lots of drugresistant TB. Widespread support for DOTS has stopped many TB programmes from saying new tools are needed now DOTS relies very old drugs and diagnostic tests to treat TB. TB patients treated through the DOTS programme can become dependent and not take responsibility for their treatment and health. DOTS focuses on people with TB who are smearpositive. Only 40-60% of people infected with TB are smearpositive. People with HIV who also have TB are more likely to test smear-negative (24-61%) and have extra-pulmonary TB (4-40%). The number of smear-negative cases is increasing all over the world Smear-negative people often go untreated under the DOTS programme. There is a big risk that people will leave the DOTS programme and not finish treatment. Many people would like to change this part of DOTS. In our report called Steering the Storm we explain: The DOTS model has its roots in paternalistic approaches where the public health official makes the decisions for the patient and the community. Under DOTS, people with tuberculosis take their treatment observed by someone else every weekday for six months. Patients are not regarded as independent people with dignity who can take control of their own health or illness. People with TB are treated as public health cases. 8 Communities must learn about TB.

17 INFOSHEET 3 DOTS needs to be adapted to a more patient centred programme with treatment literacy and support groups. Treatment supporters who understand the science of TB and HIV are an important resource for both the health system and the person with TB. INFOSHEET 1 Comments on DOTS by DOTS supporters It is not working here because once you became weak, you no longer work and you have to leave your housing. When DOTS supporters are looking for you to give treatment, they cannot find you. DOTS supporters sometimes are not allowed to enter the flats because they have no identification to show that they came to patients. They need name tags and uniforms. DOTS supporters strategies work in some communities while in other areas they fail. Most people don t complete their treatment because of poverty, alcohol and grants issues. We travel long distances on foot to cover the huge area. I have difficulties in attending patients in time. We trace defaulters on our own. The DOH does not assist us with transport and sometimes these patients stay far away. DOTS helps because some patients don t have transport money to collect medication on a weekly basis. We don t have the resources to track patients and see if they take treatment. We do not have a vehicle and there are not enough of us to visit the thousands of people in the community. To People decide with when TB must to start be antiretroviral empowered to treatment care for it themselves. helps to know your CD4 count. 9

18 INFOSHEET 2 HIV The also science needs food of Tuberculosis as treatment We must learn the science of TB In this section we talk about the science of TB. Just like we do with HIV, we must learn about the science and medicines that go with TB. This way we can understand our own TB and treatment, or that of our families, friends and communities. We must understand the science so we can make demands of our clinics and our government. We must understand the science so that we can fight for our right to health. Sometimes there are different ways of understanding illness When we talk about TB in our communities, we must remember that sometimes people have different ways of understanding illness other than the germ theory. This has always happened. Before scientists discovered that TB was caused by a bacterium, many people in Europe believed that vampires caused TB. People with TB were thought to be vampires, as they became ghostly pale and coughed blood. The people around them appeared to turn into vampires after coming into contact with them too! And, remember in ARVs in Our Lives we tell this story of a woman from Nqurha whose daughter was diagnosed with TB who said: I hear all this talk about germs, but I tell you the reason my daughter is coughing is because her uncle, who is jealous of the fact she went to get education at Fort Hare University, sent his impundulu to kick her in the chest at night and that is why she is coughing blood, truly that is why. As we said about HIV, sometimes, even though our own ways are perfectly fine and can help us, there are some cases where they will not help us. In the case of the woman above, a traditional healer was very helpful and agreed that the young woman be taken to a clinic where she received TB medicine and got better. In this handbook we will talk mostly about TB and science and the medicines that you will get from the clinic or hospital. But we will also look at the way that traditional healers can be very helpful in our communities. Like when we learn about HIV, there are lots of new words to learn with TB and TB treatment. Some of these are difficult. We can make up songs and games and have fun learning the words in our workshops. 10 Losing We must weight learn is the part science of the disease of TB. process of HIV. Eating right can prevent this.

19 Tuberculosis: The Bacteria INFOSHEET 2 Bacteria are single celled germs called micro-organisms Bacteria are tiny germs. Bacteria are very small and cannot be seen with a human eye. Bacteria can usually be seen under a microscope. They can live and multiply on their own. Unlike viruses, which can only live and reproduce inside a living cell, bacteria can grow in all types of environments including water, soil and inside plants and animals. As you can see in the picture, bacterial cells are different from human cells. Bacterial cells do not have organelles surrounded by a membrane or a nucleus to hold their DNA. Instead, bacterial DNA floats in the cytoplasm, which is held together by the cell membrane. The entire bacterial cell is covered by a cell wall, which protects it from the environment. Bacterial cells cannot survive without a cell wall. Bacteria reproduce through a process called binary fission. During this process a bacterial cell grows to twice its normal size and then splits into two, equal and identical cells. A family of bacterial cells will form a colony. A colony is a group of bacteria cells that all come from the same mother cell. There are many different kinds of bacteria and not all of them are bad for us. In fact, some bacteria produce vitamins and nutrients that our bodies need to stay alive and healthy. However, there are many types of bacteria that are not good for us. Human Cell microtubules TB Cell flagellum cell wall Binary fisson pilus nucleoid plasma membrane micro- and intermediate filaments ribosomes capsule TB germs are called bacteria. 11

20 INFOSHEET 2 When we talk about bad bacteria it is important that we understand the word virulence. Virulence means a bacteria s ability to cause disease, or its ability to hurt us. We talk about bacteria that can cause disease as being virulent. We can kill virulent bacteria with drugs called antibiotics. Human tuberculosis is an infection caused by the bacterium. Mycobacterium tuberculosis (MTB) MTB is a very virulent bacteria. MTB can travel through air, which makes it an airborne bacteria. Like humans, MTB needs oxygen to live, so it tends to live in parts of our bodies that get a lot of air which is why MTB often attacks our lungs. When living in the human body, it takes a colony of MTB about hours to double in size; this is called the generation time. MTB has a very slow generation time as compared to other bacteria. Since MTB has such a slow generation time, it takes our immune system longer to realise MTB is in our body. Slow generation time is one of the reasons MTB is so dangerous. As we can see from the picture on pg 11, MTB is shaped like a rod. Rod shaped bacteria are usually called bacilli. MTB has an extremely strong cell wall. The MTB cell wall is made up of small fat molecules, called lipids. Mycolic acids and cord factor are two of the things that make up the lipids. If we understand what these do, it will help us to understand why MTB is so virulent. Mycolic acids make up most of the MTB cell wall. Mycolic acids are very water resistant i.e. they don t let water in, like a raincoat. Inside our bodies the environment is very watery. Mycolic acids are able to protect the MTB cell from most things in this watery environment, including antibiotics, which dissolve and float inside our body after we take them. Cord factor is another reason MTB is so virulent. Cord factor is part of the cell wall that helps the rod shaped cells link together and form long snake-like cords. Cord factor is also toxic to animal and human cells. So MTB is a very virulent bacteria because it: Has a slow generation time and can grow unnoticed by our immune system Has a cell wall made up mycolic acids that keep it protected Has a cell wall made up of cord factor which is toxic to our bodies Altogether these make it easy for MTB to grow in our bodies and hurt our cells. 12 TB is an airborne bacteria

21 Tuberculosis: Infection and disease INFOSHEET 3 TB bacteria can pass from one person to another through the air The ability to pass from one person to another makes TB an infectious disease. When someone sick with TB coughs, sneezes, talks or sings, TB bacteria are released into the air in small particles called droplet nuclei. Each droplet nuclei can hold several MTB. Droplet nuclei can hang around in the air for a long time if the area is crowded, humid or has little fresh air and/ or little sunlight. These droplet nuclei can stay in the air for hours even after the person sick with TB has left the room. If you inhale air filled with lots of these droplet nuclei, the MTB inside the droplets can enter your body. When MTB enters your body, you become infected with TB. When people with TB cough or sneeze, they put TB germs into the air TB transmission usually happens indoors. The best way to avoid infection is to keep windows open and keep the area around you ventilated. Fresh air can blow the droplet nuclei away from where you breathe and sunlight can easily destroy droplet nuclei filled with MTB. People are more likely to become infected with TB in crowded, damp and poorly ventilated places. Changes to building regulations and other public health interventions helped overcome TB in Britain in the 19 th century. Other factors that can increase likelihood of infection are: Poor nutrition Alcoholism HIV Being infected with TB does not always mean you will become sick In fact, most people infected with TB never become sick. This is because healthy immune systems are able to keep MTB under control. A healthy immune system is able to control MTB by releasing macrophages that surround the MTB and keep the bacteria from growing and spreading through your body. When the bacteria are not growing they are dormant (sleeping). This is called latent TB. Keep the windows open to reduce the spread of TB. 13

22 INFOSHEET 3 If you have latent TB, you cannot transmit MTB to other people you are not contagious or infectious. Latent TB is actually very common one out of every three people in the world has latent TB. Latent TB is very common in South Africa. Someone with latent TB infection will: Have MTB present in their body, but it is dormant; Have no symptoms of TB disease; Not be contagious; Not be considered a TB case. Sometimes, people infected with TB become sick When this happens, it means the body s immune system is no longer able to keep the bacteria dormant which means the MTB are active and growing. For this reason, people who become sick with TB are said to have active TB. Active TB is a very serious disease that can kill you. Of the people who become infected with TB, five to ten out of every 100 will develop active TB. HIV-positive people are ten times more likely to develop active TB. The risk increases at lower CD4 counts. This is because HIV weakens the immune system, leaving it less able to keep the MTB under control. Other factors that can increase the likelihood of developing active TB disease include: Old Age Malnutrition Alcoholism Pneumoconiosis (a lung disease, usually found in coal mine workers) Immune suppressant drugs Where does active TB develop? Pulmonary TB Once you inhale droplet nuclei, MTB enter your respiratory tract, which includes your nose and throat. Some of the droplet nuclei will get stuck there, where the MTB will probably not grow. Some of the smaller droplet nuclei will travel past the throat, through the lungs and end up in the alveoli, which are small air sacs in the lungs. In the alveoli, uncontrolled MTB can grow and spread throughout the lungs. When active TB develops this way it is called pulmonary TB. Pulmonary means, affecting the lungs. This is why TB that develops in the lungs is called pulmonary TB. 14 TB in the lungs is called pulmonary TB.

23 People with pulmonary TB usually have one or more of the following symptoms: Coughing for two weeks or more; Coughing up sputum a thick liquid the lungs make that can be yellow or green; Coughing up blood; Chills and fever; Night sweats; Weight loss and not feeling hungry; Problems breathing; Chest pain; Feeling tired or weak. INFOSHEET 3 Extra-Pulmonary TB Sometimes MTB will leave the lungs and grow in other parts of the body. This type of TB is called extra-pulmonary TB. Extra-pulmonary TB is most likely to affect the lymph nodes. It can also develop in the abdominal cavity, bones, brain, heart, joints and reproductive organs. The symptoms of extra-pulmonary TB can also include night sweats, feeling tired, weight loss, not feeling hungry and fevers. Extra-pulmonary TB is common in children and people who are HIV-positive. Extra-pulmonary TB is often hard to detect because the symptoms are not very easy to spot or pick up with diagnostic tests. Here is a list of the symptoms you might experience if you have extra-pulmonary TB: Part of the Body Abdominal cavity Bladder Bones Brain Joints Kidneys Lymph nodes Pericardium (around the heart) Reproductive organs Spine Symptoms Tiredness, swelling, tenderness, sharp pain, chronic diarrhoea Pain when you pee, blood in your urine Swelling, pain Fever, headache, nausea, feeling sleepy, coma Aches, pains Kidney damage, kidney infection Large hard nodes mainly in the neck. Not painfull and may have pus. Fever, large neck veins, shortness of breath Men lump in scrotum /Women sterile Pain, collapsed vertebrae, leg paralysis TB outside the lungs is difficult to detect. 15

24 INFOSHEET 3 TB ouside the lungs Hello, I m Busi Maqungo. I recently contracted TB of the spine. At first I thought it was a gym injury. I lived with this backache, crawling out of bed every morning. After going for physiotherapy, my backache only worsened. I realised I should see a doctor who then diagnosed me with TB of the spine. Even though I knew about TB outside the lungs, I didn t suspect it. As TB of the spine affects the vertebra in the back, I could possibly become paralysed. I am taking TB medication every day and feel better now. Treatment literacy taught me about TB outside the lungs, and the need to take each and every ailment to a doctor early on. I am not on ARVs yet, but am well prepared for when the time comes. Active TB disease progresses in phases 1. Primary TB infection You inhale droplet nuclei filled with MTB. The droplet nuclei travel to the alveoli in your lungs. In the alveoli, macrophages (white blood cells whose task it is to kill germs) surround the bacteria. These macrophages are unactivated macrophages, they can surround the MTB, but are not able to kill the bacteria. 2. MTB begin to grow and multiply in your body Inside the unactivated macrophages the MTB are able to grow and multiply undisturbed. The unactivated macrophages keep the MTB isolated and protected from things floating in the environment. The MTB grow out of control until the unactivated macrophages burst. 3. Your immune system fights the infection Your immune system finally recognises MTB in the body and starts to fight the bacteria. To do this, your immune system makes activated macrophages, which attack and kill the MTB. Activated macrophages can poison MTB cells. The more healthy your immune system is, the sooner it will recognise the MTB and start fighting the bacteria with activated macrophages. tubercule bacilli caseous centre activated macrophages lymphocyte 16 TB thrives in oxygen. That is why it is mostly found in our lungs.

25 To protect themselves from your immune system, the MTB gather and begin to form a tubercle or lesion. The tubercles have a soft centre where the MTB are not able to reproduce, but can survive for a long time. 4. The tubercles grow and spread If your body does not produce enough activated macrophages the tubercle will begin to grow and spread into the rest of your lungs. At this point, the tubercle can burst and the MTB can spread into your blood stream and travel to other parts of your body this is how extra-pulmonary TB develops. As the tubercle grows, other lesions will start to form. 5. The tubercles turn into liquid For a reason that we do not know, the soft inside of the tubercle turns into liquid. In this liquid it is very easy for MTB to grow and spread around your lungs. Your immune system continues to fight the bacteria. Your lungs become a battlefield between your immune system and the MTB. Just like most battlefields, your lungs get very damaged during this fight. This damage to the inside of your lungs makes it easier for the bacteria to spread. As the bacteria spreads, so does the battlefield, which means more damage to your lungs and other areas of your body. Most of the time, your immune system is able to get control of the bacteria during one of these phases. The stronger your immune system, the sooner it will recognise the MTB in your body and make activated macrophages to stop the bacteria from growing. A healthy immune system can control the bacteria, but cannot get rid of it Your immune system will NOT kill all of the MTB in your body. Sometimes, after your immune system finally gets control of the MTB, the small lesions heal by hardening and making scar tissue with living MTB inside. These MTB can survive for a long time and may start to grow again in the future. Once MTB is in your body, it stays until you take antibiotics to kill the bacteria. As long as there is MTB in your body, it is possible that it could start to grow and make you sick. MTB stay dormant, waiting for a time when your immune system is weakened and they can grow. If you are HIV-positive or have signs of TB it is very important that you know your TB status so you can take the antibiotics necessary to get rid of the disease. To know your TB status, you need to get tested for TB We will now talk about how to test for TB. INFOSHEET 3 A healthy immune system can control TB, but it cannot kill it. 17

26 INFOSHEET 4 Diagnosing tuberculosis Go to your clinic or hospital for a TB diagnostic test if you are experiencing any TB symptoms Recognising symptoms and going to the clinic is a very important part of diagnosing TB. If you are experiencing any of the symptoms that we talked about go to the clinic and tell them you think you may have TB! Diagnostics are machines and processes that are used in clinics to detect a disease or condition. In South Africa, the following diagnostics are used to test for TB: Smear microscopy; Chest X-ray; TB culture; Tuberculin skin test, Mantoux/PPD test. We will now talk about each of these diagnostics. It is important that you understand TB diagnostics so you know which tests to ask for and what the results mean. All of these diagnostics can help diagnose TB, but some take a long time to work or require specially trained people all of which make it more difficult for people to know their TB status. We will also talk about the good and bad side of these tests so we know what things to look for in new TB diagnostics. Smear microscopy Smear Microscopy is used to test for active pulmonary TB. If you have any TB symptoms, when you go to your clinic or hospital you should be given a smear microscopy test. Microscopy means to look at something with a microscope. The smear microscopy test is the most common TB diagnostic test used in the world. What happens? When you go to the clinic for a TB test, you will be asked to cough some sputum into a pot for a smear test. Sputum is a thick fluid coughed up from the lungs; it is different from saliva, which is the water in your mouth. Your sputum is then taken to a laboratory where it is smeared on a glass plate (called a slide) and looked at under a microscope. TB bacteria can usually be seen with a normal microscope. Results If the lab technician is able to see TB bacteria in your sputum it means there is TB bacteria growing in your lungs. You are 18 The smear test is the most common TB test in the world.

27 diagnosed smear-positive. If the lab technician does not see TB bacteria in your sputum, you are diagnosed smear-negative. You can be smear-negative and still have TB. If you have TB symptoms but test smear-negative, you will need to take the sputum test three times so healthcare workers can be absolutely sure of your smear status. If you are HIV-positive, there are special guidelines to decide if you have TB (see below). The smear test is really only able to detect lots of TB bacteria in your lungs (pulmonary TB). If there is TB bacteria growing in other parts of your body (extra-pulmonary TB) or there is only a small amount of bacteria in your lungs, the smear test may not be able to tell. If you are smear-negative, but have TB symptoms, the only way to be sure you do not have TB is to have another more sensitive diagnostic test. Many people living with HIV test smear-negative, but really have TB Many people with HIV/AIDS will have a negative smear test, even though there are MTB in their body. For HIV-positive people, there are special guidelines for TB testing. It is really important that your healthcare provider understands these special guidelines! If you are HIV-positive and have just one smear that is positive, you should be considered to have smear-positive TB; If you are HIV-positive and you have just two smears that are negative, but also have a chest X-ray and symptoms that suggest you have TB, you should be considered to have smear-negative TB and be treated for it. If you are HIV-positive, have symptoms of TB and get a negative smear test and your symptoms persist after a basic antibiotic course, you should ask for an X-ray and a TB culture test. Don t wait to get treated if you fall under the smear-negative guidelines listed above. Smear-negative TB is a growing problem The sputum smear test cannot always detect TB in HIV-positive people. Because of the HIV epidemic in South Africa extra-pulmonary TB is becoming more common. This means that smear-negative TB is also becoming more common. People who have smearnegative TB can still become very sick and die. People with smear-negative TB must be treated so it is important that we know how to be sure of our TB status. Knowing your smear status is very important People who are smear-positive are usually the most infectious, meaning they are more likely to give TB to other people, but smear negarive and culture positive people are infectious as well. For this reason, the DOTS treatment plan focuses mainly on treating people who have smear-positive TB. By treating smear-positive people first, you limit the spread of TB. By not including access to culture for HIV-positive TB suspect, a lot of people are missed for treatment. INFOSHEET 4 The smear test cannot always detect TB in HIV-positive people. 19

28 INFOSHEET 4 Chest X-ray If you have symptoms of active TB, but are diagnosed smear-negative, you should then have a chest X-ray. Chest X-rays are used to see active TB in your lungs. TB causes changes in the lungs. If you look back at the phases of TB you will remember the part about the bacteria forming tubercles or lesions in your lungs. These lesions can be seen with an X-ray machine, which takes a photo of the inside of your chest. If you have TB, your chest X-ray may show scars, big lymph nodes, pleural effusion or cloudy white areas that should be black. Chest X-rays are very important for diagnosing TB in children. X-rays require equipment and skilled people X-rays are not specific; just because you see the signs we listed does not mean you have TB. People with HIV often have damage to their lungs caused by things other than TB. They may have had several TB episodes before and have scars in their lungs which can be mistaken for TB infection. People living with HIV who have TB often have chest X-rays that look different from the X-rays of HIV-negative people. This makes their chest X-rays hard to read, which can result in a wrong diagnosis. TB Culture The TB culture test is also used to test for active TB If the lab technician cannot see TB bacteria under a microscope in your sputum, there is a chance you still have TB bacteria in your body. TB bacteria are very small. It is only when there are several bacteria clumped together that they become visible under a microscope. If there are only a few bacteria in your sputum, the lab technician may miss them and diagnose you smear-negative, even though there are TB bacteria growing in your body. The TB culture test is used to check if there are any TB bacteria in your body. Culture tests should be offered to people who are: Smear-negative, but still show signs of TB; Suspected of having extra-pulmonary TB, if a sample can be collected Suspected of having drug-resistant TB. What happens? TB bacteria are only able to grow outside of our bodies when they are placed in a special liquid food for them called culture medium. Culture medium contains all the ingredients TB bacteria need to grow. To have a TB culture test you will again be asked to cough up some sputum. This sputum is placed in culture medium and monitored by a lab technician. If your healthcare worker suspects 20 The culture test is the most accurate test for TB.

29 extra-pulmonary TB, he or she may take fluid from the area where the TB is growing and place it in culture medium instead of sputum. Results If TB bacteria begin to grow in the culture medium it means there are TB bacteria in your body. When this happens you are diagnosed culture positive. Again, TB bacteria have a very slow generation time, so any bacteria in your sputum will usually take several weeks to grow, even in culture. The culture test takes a very long time to produce a result. TB culture test is the most accurate test for TB The culture test is much more likely to find any TB in the sputum than smear microscopy. TB culture test is slow and can delay a diagnosis TB grows slowly, so it takes time for the bacteria to grow in culture medium. This means that from the time you take the test until you get your result could be several weeks. If you have symptoms of TB and an X-ray that seems to suggest that you may have the disease, you are eligible to be treated for TB. TB culture test is also used to test for drug-resistant TB Lab technicians can also put TB antibiotics in the culture medium to see if the TB bacteria will grow with antibiotics around. This is called drug sensitivity testing, which is another kind of TB culture test. If the TB bacteria in your body are able to grow in the presence of TB antibiotics, they are said to be drug-resistant. We will discuss resistance later in the manual. TB culture test is important for people who are HIV-positive HIV-positive people who are also sick with TB often show a negative result when given the smear microscopy test. This is because people who are HIV-positive often have extrapulmonary TB or only a small amount of bacteria growing in their lungs, which the smear test cannot detect. Lots of HIV-positive people are not properly tested for TB. Many do not have any of the symptoms that people with TB often have. But their TB is still dangerous. If you are HIV-positive ask for a TB culture test if you test smear-negative. The Tuberculin Skin Test (TST) The Tuberculin Skin Test is also called the Mantoux test or a Purified Protein Derivative (PPD) test. The TST can be used to determine if your body has been exposed to TB bacteria or any cousin of the TB bacteria. It does not tell if you have active TB. What happens? Like HIV diagnostic tests, the TST looks for antibodies. A healthcare worker will take a small amount of protein TB bacteria and then inject it under your skin. After 72 hours, the healthcare worker will want to look at the site of injection. INFOSHEET 4 Most people in South Afica will have a positive skin test. 21

30 INFOSHEET 4 Results If your body has been exposed to anything like TB bacteria before, it will have made antibodies that will react to the injected protein. This reaction will cause a raised circle around the place where the protein was injected. Most People in South Africa will have a positive TST In South Africa most people have a positive TST because they have been given the BCG vaccine, or they have been exposed to TB. The antibodies in their body will react with the TB protein. The TST is helpful for diagnosing TB in children, but not adults The TST is most often used in children. This is because children are less likely to have come into contact with TB bacteria in their short lifetime. Adults have usually come into contact with TB and will therefore almost always have a positive TST. We will talk about how the TST is used with children in the TB and Children chapter. TB diagnostics need a lot of improvement The current range of TB diagnostics do work, but have lots of disadvantages. The simplest test, smear microscopy, often can t tell you if you have TB, especially if you also have HIV. Other tests, like culture and X-ray, are expensive, complicated and take a lot of time to get a result. In areas without constant electricity and water, chest X-rays and culture tests are almost useless. Clinics without electricity and specially trained people have to send sputum samples to laboratories far away. During the time it takes to travel, people can spread the bacteria to others, become more sick and even die. People can also get worse during the time it takes for TB cultures to grow. When we look for new diagnostics it is important that they be fast, easy to use and able to operate in areas, which don t have constant electricity or water. What to expect at the clinic or hospital if you test positive for TB: If the results come back positive or your healthcare worker thinks you have TB based on your symptoms, he or she will tell you to begin treatment immediately. This is especially important if you are smear-positive because smear-positive people are contagious and can give TB to other people. Before starting treatment you must tell the healthcare worker if: 1. You have been treated for TB before The antibiotic regimen used to treat your TB will be determined by whether you have taken TB treatment before. The regimen for people taking TB drugs for the first time is not the same for people who have already been treated for TB. If you have taken TB drugs before, there is a chance that the TB bacteria in you body have changed and become resistant to those antibiotics. 22 We need fast and easy TB diagnostics.

31 2. You are HIV-positive This will help you to be better cared for. People with HIV and TB should take Cotrimoxazole. Also some ARVs do not work when you are on TB treatment. 3. You are pregnant Tell your doctor if you might be pregnant since some TB drugs can damage unborn babies. The drug Streptomycin can cause deafness in unborn babies. 4. You are taking oral contraceptives or the birth control pill The TB drug rifampicin makes you break down the pill faster, so it is less able to work in your body. Your doctor will need to recommend different contraception while you are taking your TB drugs. 5. Your age Some TB antibiotics have different effects depending on your age. Streptomycin should not be given to people older than 65 as it can cause kidney problems. The TB drug Ethambutol should not be used on children under the age of eight. If you are diagnosed with TB and don t know your HIV status You should ask for an HIV test. If you are HIV-positive you should receive cotrimoxazole and have a CD4 test to see if you need ARVs. In some parts of South Africa up to 70% of people with TB are co-infected with HIV. How to avoid infecting people with TB If you are smear-positive you are very contagious. With one single cough you can spread the bacteria to your friends, family or any one standing next to you. Here are some things you can do to avoid spreading TB. Start and take all of your TB treatment TB drugs are made to help your immune system get control of the TB bacteria. Once this happens, you are no longer contagious or a risk to other people. If you take your TB treatment properly, you should stop being contagious after about two weeks. Cough hygiene When you cough, TB bacteria are released into the air. To prevent this from happening you can use cough hygiene by covering your mouth when you cough or sneeze. It is best if you use a hankerchief or cloth. This stops TB bacteria from spraying into the air where other people can inhale them. Stay in areas with lots of fresh air and make sure places are well ventilated If the TB bacteria in your body are released into the air, they will get blown away from people. INFOSHEET 4 Cover your mouth with a cloth when you cough. 23

32 INFOSHEET 4 Here are some practical things you can do to keep areas well ventilated. This is also very important for people who are not infected with TB: In a taxi open the windows to keep air blowing. In a house with lots of people open the windows. If there are no windows, or the windows do not work, open the door every so often to keep air flowing. Avoid areas that may be poorly ventilated. Preparing for TB treatment Taking TB drugs is not easy. TB treatment is long and the drugs have side effects that may make you want to stop taking your treatment. If you do not complete your TB treatment, you risk you own life and the lives of people around you. Here are some things you should know about to prepare for treatment: Side effects All of the TB drugs have side effects. Some side effects, like nausea, are only minor while others, like peripheral neuropathy and hepatitis, can make you very uncomfortable. It is important that you tell your healthcare worker or DOTs supporter how you are feeling. Sometimes there are other drugs you can take to make the side effects go away. Drug interactions If you are taking other medications, like ARVs, they may interact with TB drugs to stop working or to produce more side effects. Again, tell your healthcare worker how you are feeling and make sure he or she knows about all of the medications you are taking, including traditional medicines. Staying healthy Like all drugs, TB antibiotics can put a lot of stress on your body. It is important that you do your best to stay healthy. This means eating healthy foods like fruits and vegetables with lots of proteins and vitamins. 24 ARVs interact with TB drugs.

33 Alcohol and street drugs It is very important that you DO NOT drink alcohol while taking TB drugs. Drinking alcohol while taking TB drugs can make you develop hepatitis and cause liver failure. Street drugs make it difficult to take treatment because when you are high you may forget to take your treatment or just not care. Traditional medicine If you start to have symptoms of TB, the decision to consult a traditional healer is your own, but you should also consult a healthcare worker. Many people will talk with a traditional healer first and this often delays the process of diagnosis. The longer you take to be diagnosed by a healthcare worker, the sicker you will become and the more people you will infect. It is important that we educate traditional healers about the symptoms of TB so they can help people begin the diagnosis and treatment process. It is also important that we improve the referral system between traditional healers and healthcare workers. It is also common for people to stop their treatment once they begin to feel better and then take traditional medicines. You must complete your entire treatment regimen, be it six or 24 months. You must only stop treatment if the regimen schedule is finished or if your healthcare worker tells you to. Traditional medicines are not a substitute for TB antibiotics. You must also tell your healthcare worker if you are taking traditional medicines as some react badly with TB drugs. Traditional healers Some traditional healers can be very helpful. I am a traditional healer. My name is Mrs Magagula. I can treat other diseases but I do not know about TB and HIV and AIDS. (Ngiyawatjela mathwasana ami khutsi bangatjeli bantfu kutsi bayakwati kulapha itb ngoba akusilo liciniso futsi akusikahle kujabuliswa kutsi unemali kube uyati kutsi awukabalaphi.) I usually teach my junior traditional healers to always tell the truth about TB and HIV. They must not lie to patients and tell them that they can cure HIV and take their hard-earned money under false pretences. I refer the patients who have HIV or TB to the clinic because that is where patients can get proper treatment and care. Not everyone is lucky enough to see Mrs Magagula, like this TAC comrade who was diagnosed with TB in I lost a lot of weight. I was using western medicines and also traditional medication. I also used to smoke marijuana. Every time I ate a meal and took the medication, I had diarrhoea. My INFOSHEET 4 Tell your healthcare workers if you are taking traditional medicines. 25

34 INFOSHEET 4 legs were painful even for short distances, like going to the toilet. Then my sister Gladys took care of me and I left the traditional medication and continued with the western medicine until I was declared cured of TB. Fikile tells a similar story: My name is Fikile Mudau from a village in Limpopo Province. I have TB and I m also using traditional medicine. I wanted my TB to be cured fast so that I could go back to work. I was using both treatments for 3months. What happened is that I had experienced a lot of problems in those three months. I was not feeling better and I told myself that these treatments are not working on my body. In the fourth month I decided to consult the doctor without explaining to the doctor about using traditional medicines. But the doctor asked me if I was using other treatment, I told him that I was using traditional medicines and he said I must stop using traditional medicine because there s a drug interaction between traditional and TB treatment. After that I decided to stop using traditional medicine and continue with TB treatment and I started to feel better. Have support TB treatment can be difficult. If you are going to start treatment, talk to someone who has completed TB treatment. They can tell you what to expect and share their experiences. You should also try to find people who can support you through treatment. Ask someone who cares for you and is reliable to be your DOTS supporter. This is very important. 26 Make sure that you have support when you are taking TB treatment.

35 Tuberculosis treatment INFOSHEET 5 TB can be prevented If you have a positive TST, but no signs of active TB, you probably have latent TB. You can kill latent TB by taking an antibiotic called Isoniazid, or INH, for six months. When you treat latent TB with Isoniazid it is called TB prophylaxis or Isoniazid Prevention Therapy (IPT). By taking IPT you prevent the bacteria from having a chance to become active, grow and make you sick. If you are going to take IPT, you must make sure that you do not have active TB If you treat active TB with only Isoniazid there is a chance you will develop resistance to this very important antibiotic. Your healthcare worker must be absolutely sure you do not have active TB before giving you IPT. If you are going to take IPT it means you: DO NOT have symptoms of active TB; DO NOT have a positive smear test; DO NOT have a positive TB culture test; DO NOT have a positive chest X-ray; DO have a positive TST. If you take IPT and develop active TB later on, you must let your healthcare worker know that you have taken IPT. They will need to test you for Isoniazid resistance. IPT is important for people who are HIV-positive It is more likely for latent TB to become active if you are HIV-positive. This is because HIV can weaken your immune system. If you are HIV-positive and not yet taking ARVs, then it is a good idea to take IPT. There is a CURE for Active TB TB drugs can destroy TB bacteria. Unlike ARVs, which help your immune system but cannot completely kill HIV, a full regimen of TB antibiotics will destroy ALL of the TB bacteria in your body. A complete regimen of TB antibiotics can last anywhere from six to 24 months, depending on the type of TB you have. TB antibiotics can cure TB, if they are taken properly. How TB antibiotics work TB drugs are described as being either bactericidal or bacteriostatic. Bactericidal antibiotics kill bacteria. Bacteriostatic antibiotics slow the growth and reproduction of the bacteria. They also fight against different types of bacteria. The best way to think of the TB bacteria is to think of them as people. Remember we talked about TB bacteria having a slow generation time? This means they take longer to grow and reproduce than most bacteria. People also usually have a long life time and Isoniazid can be used to prevent TB. 27

36 INFOSHEET 5 take a long time to reproduce compared to other animals. But some people grow quicker and start having babies sooner than others. TB bacteria are the same. Once inside our bodies, some TB bacteria are very active. So they grow and reproduce quickly. Other TB bacteria take a long time to grow and reproduce. Then there are dormant bacteria, which do not grow at all. Some TB antibiotics are only able to fight very active TB bacteria, while others fight both active and slowgrowing TB bacteria. The first line TB antibiotics At the moment, there are five first line TB antibiotics available in South Africa. We use four together. The drugs and their abbreviations are: Isoniazid, INH (H); Rifampicin (R); Pyrazinamide (Z); Ethambutol (E); Streptomycin (S). First line TB drugs are used to treat most cases of pulmonary and extra-pulmonary TB. Only people with drug-resistant TB are not treated with the first line TB antibiotics. Later on we will discuss drug-resistant TB and treatment with second line TB antibiotics. Why do we need to take a combination of TB drugs? We mentioned earlier that TB bacteria are not all the same. As you will see below, each first line TB antibiotic has its own way of killing a specific type of TB bacteria. The first line antibiotics work together to make sure every type of TB bacteria is killed. We take a combination of drugs to prevent resistance and make sure all of the TB bacteria in our body are killed. How do the first line TB antibiotics work? TB bacteria are made up of different things. TB antibiotics work by stopping different parts that make up TB bacteria from working. Isoniazid INH is bactericidal. INH stops TB bacteria from making mycolic acids, the biggest part of the cell wall. If TB bacteria cannot make mycolic acids, the cell wall cannot form. Without a cell wall for protection, the bacteria cannot survive. INH kills 90% of all of the TB bacteria during the first months of treatment. Rifampicin Rifampicin is a bactericidal antibiotic. Rifampicin stops TB bacteria from making proteins. Without proteins, TB bacteria cannot function. Rifampicin is able to kill the difficult, slow-growing TB bacteria that INH cannot. 28 We use a combination of TB drugs to make sure we kill TB.

37 Pyrazinamide Pyrazinamide is usually bacteriostatic, but can be bactericidal on TB bacteria that is reproducing quickly. Pyrazinamide shuts off the protein TB bacteria use to make fatty acids. Fatty acids or lipids are what make TB bacteria have such a strong cell wall. When the TB bacteria stops making fatty acids, the cell wall weakens and other antibiotics are able to get inside the bacterial cell. Ethambutol Ethambutol is a bacteriostatic antibiotic. Ethambutol stops mycolic acids from coming together to form a strong cell wall. Streptomycin Streptomycin is a bacteriostatic antibiotic. Streptomycin stops TB bacteria from making proteins and damages the bacteria s cell membrane. First line TB drugs are old All of the first line TB antibiotics are over 30 years old! INH, the strongest antibiotic, was first made in Rifampicin was developed in The oldest antibiotic, Streptomycin, was first made in Over the past 30 years there has been little change to first line TB treatment. These antibiotics do work, but only when you take them for a long time. There is a lot of room to improve first line TB treatment. The National Tuberculosis Control Programme In 1996 the South African Department of Health launched the National Tuberculosis Control Programme (NTCP) to address the TB epidemic. The NTCP makes the guidelines that decide how TB is diagnosed and treated in South Africa. The NTCP uses the DOTS strategy to manage TB. First line TB treatment regimen There are many treatment regimens for people with active TB. Which regimen is best for you depends on your history with TB, how you respond to the medicines and the type of TB you have. If you are being treated for TB for the first time, the NTCP guidelines recommend a regimen made up of a two month intensive phase followed by a four month continuation phase. Intensive phase During the intensive phase you will take four TB antibiotics: Isoniazid, Rifampicin, Pyrazinamide and Ethambutol (HRZE) daily, usually in fixed dose combinations (FDC). In South Africa, the FDC is called Rifafour. INFOSHEET 5 TB treatment is and intensive phase followed by a continuation phase. 29

38 INFOSHEET 5 Continuation phase During the continuation phase, you will take fewer drugs for a longer time. You will take Isoniazid and Rifampicin for four months, five times a week. The FDC is called Refinah. For re-treatment, the continuation phase is rifampicin, isoniazid and ethambutol for 5 months. This phase is very long in order to make sure that all of the TB bacteria in the body get killed and can t make you sick again. The following table shows the two phases. What happens during treatment? If you follow your treatment regimen your symptoms will get better about two weeks after you start taking antibiotics. After about three weeks, you are no longer infectious, or able to spread TB to other people. The four drugs you are taking will have killed lots of the bacteria and hopefully made the rest unable to grow. You should still be careful, though, and cover your mouth when you cough and use other TB prevention measures at home. Table 1 New cases, age above 8 years and adults Pretreatment Intensive phase (2 months) Continuation phase (4 months) weight RHZE (Rifafour) RH (150mg; 75mg) RH (300mg; 150mg) 30-37kg 2 tablets, 5x/week 2 tablets, 5x/week 38-54kg 3 tablets, 5x/week 3 tablets, 5x/week 55-70kg 4 tablets, 5x/week 2 tablets, 5x/week >71kg 5 tablets, 5x/week 2 tablets, 5x/week Table 2 Re-treatment cases Pretreatment weight Intensive phase (2 months) FIVE TIMES A WEEK RHZE (Rifafour) Streptomycin injection 3 rd month initial phase: 5X/WEEK RHZE (Rifafour) Continuation phase (4 months) FIVE TIMES A WEEK RH (150mg; 75mg) E (400mg) 30-37kg 2 tablets 0.5g 2 tablets 2 tablets 2 tablets 38-54kg 3 tablets 0.75g 3 tablets 3 tablets 2 tablets RH (300mg; 150mg) E (400mg) 55-70kg 4 tablets 1g 4 tablets 2 tablets 3 tablets >71kg 5 tablets 1g 5 tablets 2 tablets 3 tablets 30 Continue to take treatment even if you feel better.

39 Treatment will make us better My name is Awesa and I am 31years old. I am a Zambian, currently staying in South Africa. Last year in December I was very sick and even had to stop my job as a hairdresser. I was coughing non-stop and my chest felt as if it could not function. It was hard for me to breathe. I was losing weight and sweating a lot at night until I went to the hospital in May. At the hospital I was given a bottle to cough sputum into. The following day I went back to the hospital to submit the sputum bottle to the healthcare workers. I was told to come back for the result after two weeks. The results showed that I had TB. I was advised to do VCT. I was afraid and reluctant because I have heard that if people have TB, they sometimes also have HIV. I am now in my last month of my six-month treatment plan. I did not default from taking my treatment, although Rifafour which I took for two months were big and hard to swallow. The nurses at the hospital transferred me at the clinic in my surrounding area. This made things easier as I did not have to go to the hospital in town for my supply and check-ups. My health has improved and I even wear my old clothes which were too big for me before I started treatment. I am recovering, and I am becoming the real Awesa that I knew and loved. I now weigh 55kg compared to when I was very sick weighing 40kg before I started treatment. Although I experience some problems, which my treatment supporter calls side effects, I continue taking Treatment. My ears are buzzing and I cannot hear properly, I also suffer from dizziness, which is troubling me a lot and I hope it will go away. I am almost finished with my treatmen. My sputum tested negative again a few weeks ago and I am happy. Treatment saved my life, I advise anyone who experiences TB signs and symptoms to consult a healthcare worker and take care their treatment properly. TB is curable. INFOSHEET 5 You must continue taking your treatment even if you feel better Even when you start feeling better, there will still be TB in your body. If you stop treatment before six months, the bacteria will start to grow again and you will become sick and infectious again. Monitoring your progress Smear Conversion Your healthcare worker will be able to monitor your treatment using smear tests. Remember that smear tests are used to see if there are TB bacteria in your sputum. The TB antibiotics will fight TB bacteria in every part of your body, including your lungs. As you continue with the treatment regimen, the antibiotics will kill off the bacteria in your lungs and, eventually, there will not be any TB bacteria in your sputum. Take all your TB treatment. 31

40 INFOSHEET 5 When the lab technician cannot see TB bacteria in your sputum, your smear status becomes negative. When you become smear-negative, you are said to have undergone a smear conversion. It is called a smear conversion because your smear status has changed or converted from positive to negative. Smear conversion is a sign that your treatment is working. 32 Smear conversion does not mean your TB is cured. As we have said, you must continue taking all of your TB antibiotics until your healthcare worker tells you to stop. Smear Conversion usually happens after two months If your treatment is going well, smear conversion should happen at the end of the intensive phase. If you stick to your treatment regimen, you will stay smear-negative. Another smear test should be taken at the end of the continuation phase. If you are still smear-positive after two months of TB treatment it may be because you are experiencing slow progress, you have not stuck to your treatment or because you have drug-resistant TB. Side effects TB antibiotics have many side effects. You should tell your healthcare worker if your TB treatment makes you feel sick. Your healthcare worker may be able to give you other tablets that can make you more comfortable. DO NOT stop taking your treatment without talking to your healthcare worker. Here is a list of the side of effects of the first-line TB antibiotics. Drug Minor side effects Major side effects Isoniazid Peripheral neuropathy (tingling, numbness and pins and needles in feet) Tiredness Joint pain Hepatitis Skin rash Fever Rifampicin Anorexia Nausea Mild abdominal pain Itching Vomiting Hepatitis Pyrazinamide Joint pain Hepatitis Ethambutol Peripheral neuropathy Joint pain Progressive loss of vision Skin rash Streptomycin Rash, Fever Dizziness Vomiting Anaphylaxis Disturbed balance Deafness (also to foetus)

41 liver Hepatitis Hepatitis is a side effect of three of the five first line drugs. Hepatitis is a disease that affects the liver. Isoniazid, Rifampicin and Pyrazinamide put a lot of stress on your liver. If you are taking these antibiotics you must avoid doing other things that can damage your liver, like drinking alcohol and using street drugs. Some ARVs also put stress on your liver. Damage to you liver can cause liver failure, which can kill you. INFOSHEET 5 Is the first line treatment regimen the same for everyone? No, the first line TB treatment regimen can be slightly different for women, people who have been treated for TB before and people who are HIV-positive. Re-treatment If you have active TB (smear-positive or culture positive) and have used TB antibiotics before, you will need re-treatment. People needing re-treatment are much more likely to have drug-resistant TB. If you are a re-treatment case, your TB treatment regimen will include the antibiotic Streptomycin and a longer treatment regimen. Here is chart of the re-treatment regimen: Phase Length of Time Antibiotics Initial 2 months INH, Rifampicin, Pyrazinamide, Ethambutol, Streptomycin Middle 1 month INH, Rifampicin, Pyrazinamide, Ethambutol Continuation 5 months INH, Rifampicin, Ethambutol All drugs are given five days a week TB treatment for women If you are a woman taking TB treatment, here are some things you should consider: If you are pregnant It is still very important that you take TB treatment. Most first line TB drugs are safe for you and your unborn baby. Only Streptomycin can cause your baby to be born deaf. If you are pregnant, your healthcare worker will not give you Streptomycin. If you need the retreatment regimen, you will likely do it as written, but without Streptomycin. If you are breastfeeding You can still take TB treatment if you are breastfeeding. TB treatment will not make your child sick. It is very important that you take TB treatment properly, so that you are not contagious and cannot infect your child with TB. If you are smear-positive, your child should be given TB prophylaxis. If you need re-treatment, you are more likely to have drug resistent TB. 33

42 INFOSHEET 5 If you are taking oral contraceptives Rifampicin can stop oral contraceptives from working. Your doctor will probably give you the option of either taking a higher dose of oral contraception or use a different kind of contraception, such as condoms. You can take TB medicines when you are pregnant. My name is Mahlatse Molefe. I m 30 years old and a single mother of two kids a boy and a girl. I live in Mpumalanga in the Kangala district in Pankop, a semi-rural area. In 2001 I fell pregnant and I attended my antennal clinic where I was encouraged to go for VCT for in case I tested positive for HIV. I refused to test for HIV because of the stigma around HIV and AIDS and because I was scared of being discriminated against. I only got tested for TB due to my persistent coughing. The results came back positive but I didn t have enough information on the importance of adherence to TB treatment and the effect of TB on my unborn baby, I started TB treatment when I was four months pregnant but I failed to take my medication because of the side effects. I was vomiting and had peripheral neuropathy. I decided to stop my TB treatment and I gave birth to a baby that was very sick. I was also told that my baby has cryaptoccocal meningitis. My baby is always sick now, and the doctor said I should take TB tests which also came back positive. I was put on TB treatment again but this time Streptomycin was added to my treatment and I decided to stick properly to my treatment and now I am cured. My name is Nelly Zulu and I live in Kriel near Witbank in the Nkangala district of Mpumalanga. I found out that I had TB in July 2007 when I was sick and transferred to hospital in Witbank. I was coughing up blood. This had been happening for over three weeks. At Witbank hospital I was diagnosed with TB and I was then sent to the TB hospital in Witbank in August. I was also five months pregnant and diagnosed with HIV. I started with my TB treatment and I m currently experiencing side effects from the treatment, I m happy that I got information on side effects. I have also learned a lot about ARVs. I am on the PMTCT programme. I am now eight months pregnant. I expect to be completely cured from TB and give birth to a healthy baby. I will also start on ARV s when my CD4 count is below You can take TB medication if you are pregnant.

43 People who are HIV-positive TB is a very common problem for people who are HIV-positive. INFOSHEET 5 TB is curable! My name is Tholakele Sibiya and I was tested in 1998 and I was HIV-positive. After that they took a sputum test for TB because I was coughing for more than three weeks. The results came back and I had TB. They told me that I must take TB treatment for six months. I told my mother and she prepared an imbiza to drink. I refused to drink it because in the clinic they told me not to mix TB treatment and imbiza. At that time I was confused because I had to think about HIV and TB. Also the people I was living with treated me as if I was about to die. I did take TB treatment for six months and now I feel fine and strong to face life. Today I am a TAC member who is educating other people about TB and HIV and I make sure people do understand about it and the treatment. TB is curable if people take treatment in time. Now I m strong and I always use condoms. TB and children Children usually get TB from adults who are contagious. If you are an adult who has been diagnosed and treated for TB, it is important that any child in your care is also tested for TB. A child has a very high risk of getting TB if he or she is less than five years old and living with a smear-positive adult. Any child in this situation should be given TB prophylaxis. This is especially important for HIV-positive children, as they have an even greater risk of getting TB and becoming sick. Children with TB are usually given the same TB treatment regimen as adults. The drugs are safe for children and usually well tolerated. Most TB drugs are not available as syrups, so tablets are usually divided according to a child s weight and crushed with food. Just like adults, most children infected with TB usually do not develop active TB. If active TB does develop, children often develop extra-pulmonary TB and/or more serious forms of TB like TB meningitis. There is much more to consider when managing TB in a child. There are some important things to know about TB in children. TB is curable. 35

44 INFOSHEET 5 Floyd Makhubela was born on 9th February, When he was two, he became very sick. They took him to a doctor who could not tell them why Floyd was sick. Then he went to the public clinic where they found that he had TB. He is now taking TB treatment from the Nkuri clinic. His grandmother is his treatment supporter, as his mother is away looking for a job. Floyd can now play with other children and his life is better than before. He still has a few months of treatment left as the TB is not yet cured in his lungs. He has a few side effects and he needs support from people at home, but he is getting better. Symptoms Children have the usual symptoms of TB such as coughing and night sweats. Many will also have trouble gaining weight. It is important to monitor a child s weight gain, which you can do using a Road to Heath Chart. Failure to gain weight is a good reason to suspect TB. Children with TB may also wheeze or have enlarged lymph glands that are not painful. Another sign is if a child has a fever, especially if it lasts for more than seven days. Since children often develop extra-pulmonary TB, you should also be aware of the symptoms of extra-pulmonary TB. These include: swollen lymph glands, meningitis and skin rashes. Diagnosis Diagnosing TB in children can be difficult. It can be hard to get good sputum samples from children younger than eight. If children are given a smear test they will usually test smear-negative. This is because small children can rarely give good sputum samples, their TB is extra-pulmonary or the number of bacteria in their body is much smaller than that in an adult. When testing children for TB, the most important diagnostics are the TST and a chest X-ray. The chest X-ray is the most useful diagnostic for testing children. It is important that we campaign to make chest X-rays more accessible. TB meningitis This is a very serious form of TB that often affects children and HIV-positive adults. Normal active TB is a serious problem for children. But for children with healthy immune systems, normal active TB usually takes a long time to develop, if it develops at all. TB meningitis though, is very dangerous. If not caught and treated, this form of TB can develop quickly and have very serious effects like blindness, delayed development or even death. Signs of TB meningitis include headache, enlarged liver and spleen, convulsions, drowsiness, irritability, neck pain and trouble breathing. 36 Even Children if you with feel TB better, are given make the sure same you treatment complete your as adults. TB treatment.

45 It is important to recognise these signs so children with TB meningitis can be treated right away. Treatment is generally the same as for normal active TB, but other drugs like steroids and Diazepam are needed to control serious symptoms like convulsions. Tracking infection It is important to find out where a child s infection came from so that the adult can also be treated for TB. If a child younger than five years old has TB, it is likely that that child lives with someone who has active TB. Adherence What is adherence? Adherence is a word that we are very familiar with from HIV! It describes taking your drugs exactly as they are prescribed. This includes taking them at the right time, and for the right lenght of time. This also includes following any special dietary restrictions. When talking about TB treatment, people often use the word default. To have defaulted means you stopped taking TB treatment before the regimen was supposed to end. Defaulting is a major problem in South Africa. Why is adherence important? Not taking your treatment can mean problems for you and all of the people around you. TB antibiotics only work if you keep a constant minimum level of each drug in your body for the entire regimen time. If you do not maintain the minimum level of TB drugs, the bacteria will continue to grow and cause disease. You will also remain contagious and be a danger to the people around you. If you are taking TB treatment, adherence is the best way to protect yourself and the people around you. What makes adherence difficult? There are many factors that make adhering to TB treatment difficult. Defaulting often happens when TB control programmes are poorly managed Poorly managed TB programmes can result in: People not having proper support to complete their full course of treatment; Health-care workers prescribing the wrong treatment, dose or treatment length of time; Inconsistent or poor quality drug supply. INFOSHEET 5 Children living with smear-positive adults should be given IPT. 37

46 INFOSHEET 5 People taking TB treatment need support The TB antibiotics have side effects that can make life uncomfortable and make you want to stop taking treatment. The TB regimen is also very long. It can be difficult to stay on treatment for many months at a time, especially when the treatment has a lot of side effects. Using alcohol and street drugs can also make it difficult to stick to TB treatment. The DOTS programme is supposed to provide support through education and DOTS supporters, but this does not always work well. Taking treatment can be difficult. In 2004 I was diagnosed with TB. I started treatment at Pietermaritzburg central clinic and was also given vitamin B complex. After two months I stopped my treatment. My major reasons were the problems of vomiting and stomach pains. I also feared being fired at work, so I did not take my treatment properly at work. I then suffered a loss of appetite and eventually could not work any more. A health worker doing home visits advised me to go to the clinic again for a test, which I did and it came back positive. I was getting worse instead of improving after the first two months of my treatment. After a while my daughter was diagnosed TB positive and we both took TB treatment. I also had a Streptomycin injection every day. I was working as a croupier. If I missed any time off work I would lose my job. So I missed many of my doses. I developed MDR-TB. I was working in a laboratory with healthcare workers. They helped me. They even helped me to inject my Streptomycin. I didn t have to hide my medicines or take time off. My co-workers were very supportive. If you are taking treatment, try to identify people who can support you. A reliable person who cares about you can help make treatment much less difficult. Someone like this can be around to offer to support you if you have any problems. Or they can become your DOTS supporter and be trained to help you take TB treatment properly. Just like HIV treatment, when using TB treatment you need to take all or nothing! Adhering to the TB treatment is the only way to make it work. It is also the only way to make you better and prevent the TB epidemic from getting worse. 38 People taking TB treatment need support.

47 Then there is the problem of resistance Like HIV, TB bacteria can become drug-resistant. Drug resistant strains of TB can easily develop if you do not take your TB treatment properly. The DOTS programme was created to prevent more people from developing MDR-TB. The programme is meant to help people adhere to their treatment, so they do not develop resistance to the first line antibiotics, especially INH and Rifampicin. If you are taking TB treatment, adherence is your best weapon against drug-resistant TB. INFOSHEET 5 Adhering to TB treatment is the only way to make it work. 39

48 INFOSHEET 6 Drug resistant tuberculosis What is drug-resistant TB? Drug resistant tuberculosis means that some of the strongest TB drugs cannot fight the TB bacteria in your body. Drug resistant tuberculosis is a very serious problem in South Africa. It is one of the major reasons TB is such a crisis in this country. We must understand drug-resistant TB so we can get control of this problem and prevent it from becoming worse. Why does drug-resistant TB exist? TB bacteria are living things, and just like most living things they want to survive that means learning how to survive TB antibiotics. Resistant TB the boxer Imagine you are very strong boxer and today you are up against a fighter named TB. Your fighting strategy is to give all of your strongest punches, because when you do you always knock out your opponent within six rounds. But today, you are tired and decide not to give your strongest punches for the first six rounds. What happens? The smart TB stays in the ring and studies your moves. After a few rounds, TB has learned how you fight. TB then changes its fighting style so it can avoid your punches and beat you. Drug resistance happens in the same way. The TB antibiotics are your strongest punches. The rounds are the number of months it takes to finish treatment. The TB drugs are your fighting strategy. When you don t take all of your TB antibiotics, the bacteria has time to learn to fight back. The TB bacteria change structure, or fighting strategy, so your treatment no longer works. Once the TB is able to avoid the TB drugs it continues to grow and cause disease in your body. The small changes to the structure of TB bacteria are called mutations. If you do not adhere to your TB treatment, the bacteria mutate and become drug-resistant. Why does drug resistance happen Up to now drug resistance was almost always the result of people not being able to adhere to their treatment. These days with so much TB and HIV co-infection in some communities in South Africa, up to a quarter of new TB cases are drug resistant TB. As long as poor adherence continues, the problem of drug resistance will only get worse. There is treatment for drug-resistant TB, but this treatment is long and very expensive. It also has many more 40 Drug resistant TB is very serious in South Africa.

49 side effects, which make adherence even more difficult. Since adherence is the root of the problem of drug resistance, solving this problem means addressing everything that makes adherence difficult. What stops people from being adherent? Sometimes this can happen through someone s own circumstances. But there are other factors that can lead to TB treatment interruptions like drug supply. For instance the national primary healthcare survey in 2003 showed that 20% of primary healthcare facilities had no TB drugs in stock at the time of the survey. Early adherence and drug supply problems were also caused by not using a fixed dose combination. This led to an enormous pill burden. Fixed dose combinations only became the standard of care in South Africa in Sometimes healthcare workers prescribe the wrong doses or don t explain them properly. Forms of drug-resistant TB There are two forms of drug-resistant (DR)TB, Multi-Drug Resistant TB (MDR-TB) and Extensively Drug Resistant TB (XDR-TB). Both have led to a major crisis TB in South Africa. MDR-TB: A definition MDR-TB is a form of TB bacteria that is resistant to the two strongest anti-tb drugs Isoniazid and Rifampicin. MDR-TB is very difficult to treat. Around the world, only a little more than half of the people infected with MDR-TB are cured. How common is MDR-TB? Since the mid 1980s there have been cases of MDR-TB in South Africa. MDR-TB has appeared in all of the nine provinces. The Medical Research Council (MRC) estimates that one out of every 100 people who are being treated for TB for the first time has MDR-TB. Six out of every 100 people being treated for TB a second time have MDR-TB. In South Africa there are at least 6,000 new cases of MDR-TB every year. How do you get MDR-TB? There are two ways of getting MDR-TB. 1. Primary resistance Just like regular TB, MDR-TB gets into the air when someone sick with MDR-TB coughs or sneezes and releases droplet nuclei filled with MDR-TB. When you inhale air filled with MDR-TB particles, the bacteria enter your body and you become infected with MDR-TB. INFOSHEET 6 MDR is a form of TB bacteria that is resistant to the two strongest anti-tb drugs. 41