Transcripts For KQED Frontline 20140326 : vimarsana.com

Brave community who let us into their lives to shed light on a new epidemic of a very old disease. They take us away from our homes so that we cannot be dangerous to the people outside. Narrator a disease that is becoming resistant to treatment and is spreading. In developed countries, they should be threatened with this worldwide spread of tb. Anyone can get tb. Anyone can die from tb. Narrator intimate stories of people fighting to survive. Stories of courage, loss and hope that the world will pay attention. In 21st century, we shouldnt have people dying from tb. Frontlinis made possible by contributions to your pbs station from viewers like you. And by the corporation for public broadcasting. Major support for frontliis provided by the john d. And catherine t. Macarthur foundation, committed to building a more just, verdant and peaceful world. More information is available at macfound. Org. Additional funding is provided by the park foundation, dedicated to heightening Public Awareness of critical issues. The wyncote foundation. And by the frontline journalism fund, with major support from jon and jo ann hagler. And a grant from millicent bell, through narrator 12yearold nokubheka lives here in swaziland with her 17yearold brother, melusi. Recently, their mother died, of tuberculosis, leaving them orphans. coughing when they told me she has tb i felt so miserable, so dejecte. So bad, because tb, i know tb. It is a common disease, which destroys people. If tb isnt treated, it can eventually kill the individual. Tb is the disease that can kill my sister. One day, a man was sitting on the tallest tree in the forest. coughing forgetting he is the. Narrator nokubhekas mother died from a multidrugresistant mutation of tuberculosis, known as mdrtb. This form of the disease is far harder to treat. Melusis greatest fear is that nokubheka may also have the drugresistant strain. both laughing narrator she is already being treated for regular tb. Today, the nurse is bringing news about her latest test results. Narrator the brother and sister share one room, so to protect melusi from catching the potentially lethal infection, nokubheka now has to go and live in an Isolation Hospital two hours away. thunder rumbling narrator swaziland now has the highest rate of tb infection in the world, partly because around a quarter of all adults are also hiv positive. With so many people already living with weakened immune systems, tuberculosis has been spreading around the country. thunder rumbling 60 miles south of the capital, near the border with south africa, lives bheki, a builder who loves soccer. Bheki recently learned that both he and his sister, zandile, have mdrtb. loud banging men shouting narrator bheki and zandile are unusual in being so open about their tb and and also that they are hiv positve. There is as great a stigma with tb as there is with aids in southern africa, so many people here keep their diagnosis secret and delay getting treated. As a result, they risk continuing to infect those around them. Narrator although cases of tb have been falling worldwide in recent years, now, new drug resistant strains are emerging and spreading. As with hiv, the only effective way of tackling these drug resistant strains is to use a combination of medications. But the treatment is complex, and the side effects toxic. Whats more, because many countries lack good diagnostic testing, few people with multidrug resistant tb get the right treatment. Bheki and zandile are being treated by the relief Group Medicines sans frontiers Doctors Without Borders which works closely with the swazi government on tb management. What is better . How often are you vomiting . Like once a month or week . One, maybe once a week. Once a week . Yes. What else . Diarrhea . And you were complaining of cramps, pain in your leg. Do you feel youve started gaining weight or not . Okay, do you still have cough . Shes not coughing. Almost all our Patients Experience some side effects, adverse reaction of the treatment. In the case of zandile, she has been experiencing the most common side effects, like vomiting for quite a long time, but she is eating now well and she has got a good appetite, shes slowly gaining weight. Narrator the side effects of the treatment make many patients so ill that they stop taking their pills. But without treatment, the disease is almost always fatal. The clinic has support groups to encourage patients to stick with their medication, no matter how grim the side effects. Narrator worldwide, around one in three people carry the tb bacteria, but have Strong Enough immune systems so they dont get sick. Multidrugresistant tb developed when patients who did get sick failed to get treated or complete their antibiotics. Now, people are being directly infected with mdrtb. Living in one room with her sick mother, this is what happened to nokubheka, so shes being sent to an Isolation Hospital to protect her brother melusi from being infected as well. coughing coughing bye bye. Narrator nokubheka will have to stay in the tb hospital for at least the First Six Months of her treatment. She will only go home if tests show she is no longer infectious. Narrator three months have passed, and bheki is missing his sister, zandile. Shes been taken to the local hospital. The side effects of her drugs have gotten worse, and shes lost too much weight. Their mother is looking after her. In the case of zandile, she has been experiencing vomiting, but at the beginning, it was manageable. But recently, shes vomiting worse and, like, dramatically, and it became intractable, not responding to treatment. So thats why she end up in the hospital with dehydration, significant weight loss. She is vomiting out drugs as well, and the drug concentration in her body is much less than its supposed to be. So there are so many things you have to consider to take a decision to suspend tb treatment temporarily in order to stabilize her condition and to improve her nutritional status. Narrator zandiles doctor faces an impossible choice if zandile maintains tb treatment, she will continue to lose weight and fluids and may die; but suspending treatment means the infection might mutate into an even more drugresistant form, which could also kill her. Do you have any complaints t . Oh, she is losing strength. Can she walk . Because of here . To suspend the tb medication was a very difficult decision for me. We should not stop tb treatment. But also, if we keep continue giving the drugs, then we anyway put you at risk to die. I want to check your weight. You gained one kg. Narrator bheki is also struggling with the side effects of the drugs. The treatment is so grueling, its estimated that fewer than half of those who start successfully complete it. groans bheki is not unusual. Hes not able any more to do all the usual activities he used to do. And thats i think made him frustrated. He has a potential to get even depressed because of the treatment. I think those who used to work and be active and suddenly they become inactive, id say a huge difference in their lifestyle, and of course it affects their mental and psychological condition. Narrator nokubheka has been in isolation in the tb hospital for three months. Very good girl. Juice. Sometimes, it reminds us its home. Narrator there are no other children nokubhekas age in the tb hospital, but 27yearold gcebile has befriended her. Gcebile was herself orphaned at the same age as nokubheka. Shes been fighting tb for over two years, but when the side effects of the drugs became too much for her, she stopped taking the tablets, and what was initially ordinary tb mutated into the multidrugresistant strain. With none of her family willing to risk looking after her, gcebile had no choice but to come to the tb hospital. Yeah, its like a prison, sometimes. Because you dont get what you want any time, you dont get. Sometimes, you dont want the food that they have given you, but you have to eat it because theres no way you can get another food. Sometimes, we need fruits from outside. They dont always give us fruit. Who will give us the fruit . They take us away from our homes to be here so that we cannot be dangerous to the people outside. So we are here now, they dont want the people to come here to give us any. Why . Narrator tb is highly infectious and can be passed through the air with a cough. Despite masks, beds spaced 13 feet apart, and numerous other precautions, two nurses at the tb hospital have already been infected, and persuading anyone to work here and care for these patients is an ongoing challenge. Narrator nokubhekas quarantine is having an impact on her brother melusi as well. You remain silent. Maybe listen to music. Nobody to laugh with. Yeah, i miss her a lot. Miss my sister. My sister always liked making things like this. Planting trees and things. She enjoys it very much. Shes left her mark. When im feeling lonely, i play music. singing narrator her friend gcebile also feels the hospital is having a bad effect on nokubheka. I dont think its a good place for her. There are older people here, people with a lot of problems, and they talk about boys and husbands, you know . I wish she could have a better life. I know this place has influenced her so much. She has changed a lot. We can even hear from her language. Having tb has changed her life so much. I think she is losing her childhood. I think its sad. Hello, nokubheka. Hi, doctor. How are you . Im fine. How are you feeling . Sit up, nokubheka. Come on. Are you still vomiting . You didnt . You didnt vomit . Are you eating well . For anyone who had to be on treatment for two years, youd agree with me, thats a lot of time, so a Long Duration of time to be taking toxic drugs. So weve had so many of those patients that stop treatment, and weve actually had a patient that committed suicide because of the diagnosis of mdrtb. So thats pretty bad. If the patient dont take properly drugs, miss drugs, its one of the very dangerous risks, its amplification of the resistance, resistance is growing. Narrator to treat his mdr, bheki is on a cocktail of medications developed between 40 to 70 years ago; two of the drugs are to ree two of them are also meant to reduce the impact of the side effects. What does it mean . You are going to choose now. We can do for night, more for night than morning. Its better to take before going to sleep, eh . Narrator nokubheka has been at the tb hospital for almost six months. If her sputum tests negative for the tuberculosis bacteria, shell soon be able to leave the hospital and continue her treatment at home. Hi, noku, how are you . Im fine. Im fine. How have you been doing . Huh . I hear youve been vomiting. Hows the vomiting now . Hows the medication going . Are you taking your medication every day . At the same time . Correctly . Yes. And do you report when you vomit . And having that chronic lung disease has its own problems in terms of, you know, functioning. But i cannot ignore the fact that the treatment has got severe side effects as well, which makes it quite difficult for patients to adhere to the treatment. Narrator nokubhekas daily injection, amikacin, is a 40yearold drug that has severe side effects. It can cause serious kidney problems, as well as nerve damage that can lead to permanent deafness. How are the ears . Narrator the rules on how far apart beds have to be to reduce the risk of cross infection mean that despite its size, the hospital can only take 70 patients. So there is always pressure for beds. A new patient has just been admitted into the bed across from nokubheka. She has scrofula, a complication of tb caused by the bacteria infecting the lymph nodes in the neck. Nokubhekas mother also had scrofula before she died. Narrator the same night she arrived at the hospital, nokubhekas new neighbor lost her battle with tb. Rator d gcebile is living in fear. Her sputum tests have remained tb positive, and shes worried she may be one of the estimated 10 percent of patients whose mdrtb is actually the even more deadly form known as xdr, or extensively drug resistant. Now they are waiting for the culture results to see if the treatment is still helping me. If the treatment is still helping then i will stay for. Two months is left. Only two months is left to finish my mdr treatment but if the culture results come posiive, i will start the xdr treatment. Yeah. That takes about two years of is and then a year of tablets. Three years, i think, like thre. We do have a regimen for xdr, but i should say its very difficult to cure xdr because were just giving what we have on the table. The reality of xdr is that its almost incurable. Narrator in a 2006 xdr outbreak in south africa, 52 of 53 patients many who also had hiv died. Even for those without the hiv, the prognosis is grim. When you start on xdr treatment, you go down. You go down because its another treatment that has new side effects. Its really bad, yeah. So i dont know what is going to happen. I dont know. Those patients, they have mdr and one mistake they can easily go into xdrtb treatment, i mean diagnosed with xdr, which is sad to see patients fading away day by day. With no. Much hope that you will cure them. There is a patient unfortunately developed xdrtb that she had contracted from her parents within the same household. Currently she is on xdrtb treatment and shes lost her parents, shes lost her hearing, and shes actually not doing so well on the treatment. Narrator the patient, gcinee discharged herself, not wanting to spend what may be her last weeks in the hospital. Unable to return to her university, she now lives in isolation at the home of her deceased parents. Imagine waking up in the morning, youve totally lost your hearing. I wouldnt wish that on anyone. Im a person who loves music a lot, especially gospel from my church, so i miss listening to that music. I had my own Favorite Song and, you know, i found myself taking my phone, trying to listen. Theres nothing i can hear. My mind is so suicidal, i also hated myself, you know. When i look at a rooftop i think to myself, i wish i knew how to tie that knot, and i try remembering you remember i tried remembering how we used to do it as girl guides, but it just doesnt come back, but i remember all the other knots, so to me, sometimes tell me that its gods work that i cant remember that knot. cause if i would, i know myself, i would do it. My dad, then the older one, me, and my brother. It crushes me. My friends have boyfriends or husbands. What man would want a girl with tb, skinny and bone . You see how hard it is. Its very hard. cause even if people just see the face, think like, wow, shes beautiful, but come see the whole body, scary, no guy would fall for that. Ive took every single injection they have on the regime, every tablet. Im not going to win this battle. Thats it. Im not going to win it. I never will. Instead, its just killing me slowly. Next thing ill be crazy out there. Because this things slowly eating me up. It will take a while, but the disease is progressing. Itll progress to a point where she probably cannot use the bit of lungs shes left with. I am deaf. cause of tb. I lost my parents and my sister cause of tb. Ive been out of school now cause of tb. I cant enjoy my youthful days cause of tb. Im not living like every other people with their siblings in the same house, cause of tb. Like seriously now, how many things are going bad for me just cause of tb . You see, i really dont care about the stigma, cause im now able to stay alone. But like seriously, all these things, just cause of tb. Its not fair. Its really not fair. Narrator by 2013, xdrtb cases, although few in number, had been reported in 92 countries. people singing people singing narrator during zandiles f, a fire started inside bhekis house, and many of his possessions and some of his tb medications were caught in the flames. Narrator while bheki struggles to get back on his medicines, there is new hope for nokubheka. After six months of daily injections, her sputum tests are now negative. Her brother melusi is still at school, being supported by a local church. He cant afford to look after nokubheka, but the church has found a family willing to take care of her for now. Shes the only little sister ive got. Narrator nokubheka still has at least a year of taking numerous drugs every day, and if she lapses, the disease will come back. So a normal life, free from tb, is still a long way off. Narrator but things are not going so well for nokubhekas friend from the hospital, gcebile. How are you today . We are following on your results and your clinicals. You have been on medication for more than a year now. Its a year almost, yeah . But each time we are taking your sputum, the results are coming back positive. Theyre not changed. So it shows that the drugs are not working on you. Because its not possible that the drugs are working and you are fine clinical, but each time we are testing it, we come in positive and positive and positive, no change. So its true that we know you feel bad. No one can be ready to be told that, okay, my results are not better, but that is the reality. You are not doing okay. The drug we are giving you are not giving us any change, as long as when we monitor the bacteria, still there always. You are going to move from this ward to other ward. Because this side we are keeping those patients who are culture negative, smear negative, but you are not among them now. Forget about going home now. This now its xdr. I know you need to cry now. Its sad news, i admit, so yes, have your time. We will talk later. This is now xdr. Thats the information we wanted to deliver to you today. Narrator bheki is stil stru to adhere to his complex drug r. New tb drugs are finally coming to market, but Health Officials worry that affordable, more effective treatment is still years away. I feel sorry that in this era of globalization, we still use old, old drugs and we cannot eliminate tb. Narrator nokubhekas friend gcebile couldnt face the thought of living in an xdr isolation ward, so shes discharged herself and is living alone at home. Im just dying inside. This cant help me. I cant cry every day, every day, every day. Its gonna cause me a lot of sickness. So i have to. Ive left everything in gods hands now. Narrator gcebile is still fighting her battle with xdrtb. Anyone can get tb. We all use public transport. And even at the workplace, you dont know whose health is in what condition. You dont know whos sick, who is not sick, who is faithful to their medication and whos not. So tbs just in the air. So whether youre poor or rich, you cant stop that. Theres no way you can stop it. Narrator six weeks after filming, gcinekile lost her battle with xdrtb. Tb kills, and you cannot choosee air you breathe. And hence, weve got to effectively control tb. If we want to make ourselves safe. coughing in developed countries, in western countries, they should be threatened with the spread of tb. coughing we are living in the era of globalization. So infectious airborne diseases like tb is given great opportunity to spread worldwide very rapidly and have a huge impact on Global Public health. Next timfrontline. The north korea the regime doesnt want seen. If people stop believing in the regime, that means Central Control is breaking down. With undercover footage and exclusive interviews, frontline uncovers a new generation risking their lives to smuggle information in and out. Any kind of uprising will probably fail, and all your relatives will be sent to prison camps. Inside the secret state of north korea. Visit pbs. Org frontline. How are nokubheka and bheki doing now . Find out more. Explore an interactive map showing where the disease has hit the hardest. When you start an xdr treatment. Learn more about the spread of drugresistant tb and the search for a better treatment. Its not fair. Connect to thfrontline community, sign up for our newsletter, and follow us on facebook, twitter and pbs. Org frontline. Frontlinis made possible by contributions to your pbs station from viewers like you. And by the corporation for public broadcasting. Major support for frontliis provided by the john d. And catherine t. Macarthur foundation, committed to building a more just, verdant and peaceful world. More information is available at macfound. Org. Additional funding is provided by the park foundation, dedicated to heightening Public Awareness of critical issues. The wyncote foundation. And by the frontline journalism fund, with major support from jon and jo ann hagler. And a grant from millicent bell, through captioned by Media Access Group at wgbh access. Wgbh. Org for more on this and other frontline programs, visit our website at pbs. Org frontline. Frontlinetb silent killer is available on dvd. To order, visit shoppbs. Org, or call 1800playpbs. Frontline is also available for download on itunes. What if television. Ali i shook up the world could remember the heroes we honored . The music we danced to . The dreams we chased . Kennedy the hope still lives, and the dream shall never die. No one tells our nations story like pbs. Give to your pbs station, and help bring americas story to life. Rose welcome to the program. We begin with jimmy carter about the presidency and his new book, call to action. Women, religion, violence and power. This is the most important book ive ever written. Its a subject that is the worst affliction on society that exists on earth. Its the greatest human rights abuse that ive ever known, and its largely under dressed. And women and girls are suffering in an unconscionable way that very few people know about or want to know about. Rose and we remember texan bob strauss, a former Democratic Party king maker, an ambassador to russia. Jimmy carter everybody says is a better expresident than