♪ ♪ >> When they told me that she has TB, I felt so miserable.
TB is the disease that can kill my sister.
>> NARRATOR: Tonight, a Frontline special presentation.
From the valleys of Swaziland in Southern Africa, the story of a 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 shouldn't have people dying from TB.
>> NARRATOR: 12-year-old Nokubheka lives here in Swaziland with her 17-year-old brother, Melusi.
Recently, their mother died of tuberculosis, leaving them orphans.
♪ ♪ (coughing) >> When they told me that she has TB I felt so miserable, so dejected, so... so bad, because TB, I know TB.
It is a common disease which destroys people.
If TB isn't 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: Their mother died from a multi-drug-resistant mutation of tuberculosis known as MDR-TB.
This form of the disease is far harder to treat.
Melusi's greatest fear is that Nokubheka may also have the drug-resistant strain.
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 MDR-TB.
(loud banging) >> NARRATOR: Bheki and Zandile are unusual in being so open about their TB and and also that they are HIV positive.
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.
What's more, because many countries lack good diagnostic testing, few people with multi-drug resistant TB get the right treatment.
Bheki and Zandile are being treated by the relief group Médicins Sans Frontières-- 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 once a 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 you've started gaining weight or not?
>> Okay, do you still have cough?
>> She's 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.
She's 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 don't get sick.
Multi-drug-resistant TB developed when patients who did get sick failed to get treated or complete their antibiotics.
Now, people are being directly infected with MDR-TB.
Living in one room with her sick mother, this is what happened to Nokubheka, so she's 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.
She's been taken to the local hospital.
The side effects of her drugs have gotten worse, and she's 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, she's vomiting worse and, like, dramatically, and it became intractable, not responding to treatment.
So that's 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 it's 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: Zandile's 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 drug-resistant form, which could also kill her.
>> Do you have any complaints today?
>> 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.
Are you dizzy?
No?
>> You gained one kg.
>> NARRATOR: Bheki is also struggling with the side effects of the drugs.
The treatment is so grueling, it's estimated that fewer than half of those who start successfully complete it.
>> Bheki is not unusual.
He's now not able any more to do all the usual activities he used to do.
And that's, 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, I'd 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 it's home.
>> NARRATOR: There are no other children Nokubheka's age in the TB hospital, but 27-year-old Gcebile has befriended her.
Gcebile was herself orphaned at the same age as Nokubheka.
She's 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 multi-drug-resistant strain.
With none of her family willing to risk looking after her, Gcebile had no choice but to come to the TB hospital.
>> Yeah, it's like a prison, sometimes.
Because you don't get what you want any time, you don't get...
Sometimes, you don't want the food that they have given you, but you have to eat it because there's no way you can get another food.
Sometimes, we need fruits from outside.
They don't 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 don't want the people to come here to visit us.
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: Nokubheka's 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.
She's left her mark.
When I'm feeling lonely, I play music.
♪ ♪ (singing) ♪ ♪ >> NARRATOR: Her friend Gcebile also feels the hospital is having a bad effect on Nokubheka.
>> I don't think it's 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 it's sad.
>> Hello, Nokubheka.
>> Hi, doctor.
>> How are you?
>> I'm fine.
>> How are you feeling?
Sit up, Nokubheka.
Come on.
Are you still vomiting?
>> You didn't?
You didn't vomit today?
>> Are you eating well?
For anyone who had to be on treatment for two years, you'd agree with me, that's a lot of time, so a long duration of time to be taking toxic drugs.
So we've had so many of those patients that stop treatment, and we've actually had a patient that committed suicide because of the diagnosis of MDR-TB.
So that's pretty bad.
>> If the patient don't take properly drugs, miss drugs, it's one of the very dangerous risks, it's amplification of the resistance, resistance is growing.
>> NARRATOR: To treat his MDR, Bheki is on a cocktail of medications developed between 40 and 70 years ago.
Two of the drugs are 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.
>> It's 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, she'll soon be able to leave the hospital and continue her treatment at home.
>> Hi, Noku, how are you?
>> I'm fine.
>> How have you been doing?
Huh?
I hear you've been vomiting.
How's the vomiting now?
How's 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: Nokubheka's daily injection, Amikacin, is a 40-year-old 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.
Nokubheka's mother also had scrofula before she died.
>> NARRATOR: The same night she arrived at the hospital, Nokubheka's new neighbor lost her battle with TB.
NARRATOR: Nokubheka's friend Gcebile is living in fear.
Her sputum tests have remained TB positive, and she's worried she may be one of the estimated ten percent of patients whose MDR-TB 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 back positive, I will start the XDR treatment.
Yeah.
That takes about two years injection, and then a year of tablets.
Three years, I think, like three years.
>> We do have a regimen for XDR, but I should say it's very difficult to cure XDR because we're just giving what we have on the table.
The reality of XDR is that it's 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 it's another treatment that has new side effects.
It's really bad, yeah.
So I don't know what is going to happen.
I don't know.
>> Those patients, they have MDR and one mistake, they can easily go into XDR-TB treatment, I mean diagnosed with XDR, which is sad to see patients fading away day by day with not much hope that you will cure them.
There is a patient who unfortunately developed XDR-TB that she had contracted from her parents within the same household.
Currently, she is on XDR-TB treatment and she's lost her parents, she's lost her hearing, and she's actually not doing so well on the treatment.
>> NARRATOR: The patient, Gcinekile, 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, you've totally lost your hearing.
I wouldn't wish that on anyone.
I'm 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.
There's 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 doesn't come back, but I remember all the other knots, so that to me sometimes tells me that it's God's work that I can't 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.
It's very hard.
'Cause even if people just see the face, think like, "Wow, she's beautiful," but come see the whole body, scary, no guy would fall for that.
I've took every single injection they have on the regime, every tablet.
I'm not going to win this battle.
That's it.
I'm not going to win it.
I never will.
Instead, it's just killing me slowly.
Next thing, I'll be crazy out there.
Because this thing's slowly eating me up.
>> It will take a while, but the disease is progressing.
It'll progress to a point where she probably cannot use the bit of lungs she's left with.
>> I am deaf.
'Cause of TB.
I lost my parents and my sister 'cause of TB.
I've been out of school now 'cause of TB.
I can't enjoy my youthful days 'cause of TB.
I'm 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 don't care about the stigma, 'cause I'm now able to stay alone.
But like seriously, all these things, just 'cause of TB.
It's not fair.
It's really not fair.
>> NARRATOR: By 2013, XDR-TB cases, although few in number, had been reported in 92 countries.
(people singing) ♪ ♪ >> NARRATOR: During Zandile's funeral, a fire started inside Bheki's 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 can't afford to look after Nokubheka, but the church has found a family willing to take care of her for now.
She's the only little sister I've 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 Nokubheka's friend from the hospital, Gcebile.
>> How are you, Gcebile?
We are following on your results and your clinicals.
You have been on medication for more than a year now.
It's a year almost, yeah?
But each time we are taking your sputum, the results are coming back positive.
They're not changed.
So it shows that the drugs are not working on you.
Because it's 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 it's 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, it's XDR.
I know you need to cry now.
It's sad news, I admit, so yes, have your time.
We will talk later.
This is now XDR.
That's the information we wanted to deliver to you today.
>> NARRATOR: Bheki is still struggling to adhere to his complex drug regimen.
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: Nokubheka's friend Gcebile couldn't face the thought of living in an XDR isolation ward, so she's discharged herself and is living alone at home.
>> I'm just dying inside.
This can't help me.
I can't cry every day, every day, every day.
It's gonna cause me a lot of sickness.
So I have to... Like, I've left everything in God's hands now.
>> NARRATOR: Gcebile is still fighting her battle with XDR-TB.
>> Anyone can get TB.
We all use public transport.
And even at the workplace, you don't know whose health is in what condition.
You don't know who's sick, who is not sick, who is faithful to their medication and who's not.
So TB's just in the air.
So whether you're poor or rich, you can't stop that.
There's no way you can stop it.
>> NARRATOR: Six weeks after filming, Gcinekile lost her battle with XDR-TB.
>> TB kills, and you cannot choose the air you breathe.
And hence, we've got to effectively control TB if we want to make ourselves safe.
>> (coughing) (crying) >> 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.
>> 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 drug-resistant TB and the search for a better treatment.
>> It's not fair.
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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.
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