TB: Return of the Plague

Mum died, Dad died, my sister died.

I'm next so, to me, I feel like I'm alone in this world.

We've got to effectively control TB if we want to make ourselves safe

because the truth is anyone can get TB.

Anyone can die from TB and it's a killer.

In the southern African nation of Swaziland,

around a quarter of all adults are HIV positive.

With so many living with compromised immune systems,

tuberculosis, which had been in decline for decades,

has made a dramatic comeback.

The threat for the rest of the world

is that with over 8 million new infections every year worldwide,

new variants of this deadly disease are evolving faster than ever.

Swaziland currently has the highest rate of TB infection in the world

but, with the disease spreading with a cough or a sneeze,

international travel means these lethal new mutations

are already starting to appear in Europe.

In Swaziland's capital, Mbabane, 12-year-old Nokubegha

lives with her 17-year-old brother, Melusi.

Two weeks ago their mother died from TB, leaving them orphans.

Since then, they have learnt that Nokubhega is also infected

with the disease that killed their mother.

One day a man was sitting on the tallest tree in the forest...

SHE COUGHS

..forgetting he is the...

Nokubegha's mother died from one of the new aggressive mutations

of multidrug resistant, or MDR, TB.

This disease is far harder to treat

and, with no new TB drugs introduced for almost 40 years,

the bacteria are increasingly difficult to kill.

Melusi's greatest fear is Nokubegha may also have the multidrug resistant strain of TB.

The treatment for MDR-TB lasts two years

and depends on a range of drugs that can have dreadful side effects.

Nokubhega has been tested for the disease

and today a nurse is bringing her results.

Brother and sister share one room

so, to protect Melusi from catching the potentially lethal infection,

Nokubhega now has to go and live in an isolation hospital

two hours away.

MDR-TB is increasing at an alarming rate in Swaziland.

The government has now declared the epidemic to be a national emergency.

The disease is far more lethal than ordinary TB.

Outbreaks in North America and Europe

have killed four out of five of those infected.

Worldwide, around half a million new cases of MDR-TB are diagnosed every year.

60 miles south of the capital, near the border with South Africa,

lives Bheki, a builder who is fanatical about football.

Bheki recently learned that both he and his sister have MDR-TB.

Bheki and Zandile are unusual in being so open about their disease.

There is as great a stigma with TB as there is with AIDS

in Southern Africa, so most victims keep their diagnosis secret

and, as a result, continue to infect those around them.

Around 1 in 25 cases of TB are multidrug resistant

but if someone's already been treated for TB

then catches it again,

the chances of developing MDR rise to one in five.

As with AIDS, the only effective way of tackling the disease is to use

a combination of multiple drugs to attack the infection.

Therapy is so complex and the side effects so toxic

that fewer than 3% of the world's MDR patients receive proper treatment.

Bheki and Zandile are treated by the charity Medecins Sans Frontieres,

which works closely with the Swazi government on TB management.

How often are you vomiting? Like, once a month or one a week?

One... Maybe once a week.

-Once a week?

-Yes.

What else? Diarrhoea?

And you were complaining of cramps, pain in your leg.

Do you feel you've started gaining weight or not?

But she's gaining.

OK, do you still have cough?

Almost all our patients experience some side effects,

adverse reaction of the treatment.

In case of Zandile, she has been experiencing

the most common side effect 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.

The side effects of the treatment make many patients

so ill that they stop taking their pills

but without treatment the disease is always fatal.

The clinic has support groups to encourage patients to stick

with their meds, no matter how grim the side effects.

Multidrug resistant TB first emerged because patients with ordinary TB

were not taking all their antibiotics.

While that's still a problem,

more and more people are now being directly infected by MDR patients.

Living in one room with her sick mother,

this is what happened to Nokubhega,

so she's being sent to an isolation hospital

to protect her brother, Melusi, from being infected as well.

Nokubhega will have to stay in the TB Hospital for at least

the first six months of her treatment. She will only go home

if sputum tests show she is no longer infectious.

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 got worse

and she's losing weight fast. Their mother is looking after her.

In case of Zandile she has been experiencing vomiting,

but at the beginning it was manageable.

But recently she vomiting worse, and 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 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 stabilise her condition

and to improve her nutritional status.

Zandile's doctor faced an impossible choice -

if she maintained TB treatment,

Zandile would continue to lose weight and fluids, and could die.

But suspending treatment means the infection might mutate into

an even more drug resistant form that would certainly kill Zandile.

'To suspend the TB medication was a very difficult decision for me.

'We should not stop TB treatment.'

But also if it keep continue giving the drugs

then we, anyway, we put you

at risk to die.

Are you dizzy? No?

Bheki is also struggling with the side effects of the drugs.

The treatment is so gruelling that fewer than half of all MDR patients

successfully complete the course.

Bheki is not unusual.

He's not able any more to...

to do all the usual activities he used to do.

And that's, I think, make 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.

Nokubhega has been in isolation in the TB hospital for three months.

THEY LAUGH

Very good girl, huh?

Good girl.

Sometimes it reminds us at home.

There are no other children Nokubhega's age in the TB Hospital,

but 27-year-old Gcebile has befriended her.

Gcebile was herself orphaned at the same age as Nokubhega.

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 multidrug resistant strain.

With none of her family willing to risk looking after her,

Gcebile had no choice but to come to the TB Hospital.

It sounds 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 give us any. Why?

As long as a TB patient's sputum tests positive for the bacteria,

they remain infectious.

Out in the community, they will unwittingly spread the disease

to an average of one new victim every month.

Despite masks, beds spaced four meters 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.

Nokubhega's quarantine is having an impact on her brother,

Melusi, as well.

Shut up.

You remain silent.

Maybe listen to music.

Nobody to laugh with.

Yeah, I miss her a lot.

Miss my sister.

It's my sister, it's my sister always liked making things like this.

Planting trees.

And things.

She enjoys it very much.

Er, she's left her mark.

When I'm feeling lonely, I play music.

MUSIC PLAYS THROUGH EARPHONES

HE SINGS FAINTLY

DANCE MUSIC PLAYS

Her friend, Gcebile, also feels the hospital

is having a bad effect on Nokubhega.

I don't think it's a good place for her.

There are old 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 have influenced her so much, she has changed a lot.

We can even hear from her language.

Having TB has changed her life so much.

Hello, Nokubhega.

-Hi, doctor.

-How are you?

-I'm fine.

-How are you feeling? Sit up, Nokubhega.

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 the 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 resistant,

its resistance is growing.

Bheki is on a cocktail of ten drugs, eight aimed at the TB,

and two intended to try to reduce the impact of the side effects.

What does it mean? You are going to choose now, your drugs?

We can do for night, more for night than morning.

It's better to take before going to sleep, eh?

Nokbegha 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.

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.

IN DIALECT

Nokubhega's daily injection, Amikacin is a 40-year-old drug that

has some of the most severe side effects.

It can cause serious kidney problems,

as well as the nerve damage that can lead to permanent deafness.

How are the ears?

Rules on how far apart beds have to be,

to reduce the risk of cross infection,

mean that despite it's size the hospital can only take 70 patients.

So there is always a pressure for beds.

A new patient has just been admitted into the bed across from Nokubhega.

She has scrofula, a complication of TB caused by the bacteria

infecting the lymph nodes in the neck.

Nokubhega's mother also had scrofula before she died.

The same night she arrived at the hospital Nokubhega's new

neighbour lost her battle with TB.

Nokubhega's friend Gcebile is also living in fear.

Her sputum tests have remained obstinately TB positive, and

she's worried she may be one of the 5 per cent of MDR patients whose TB mutates

into the even more deadly form known as XDR, or extremely drug resistant.

We do have a regime 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.

A 2006 outbreak of XDR in South Africa,

killed 52 of 53 patients who caught the disease.

Even now around 70 per cent of XDR patients die within a month of diagnosis.

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 in to 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, unfortunately she 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 with the treatment.

Gcinekile discharged herself from hospital wanting to spend

what may be her last weeks at home.

She's been asked not to return to her university course,

so now lives in isolation in her dead parents' house.

Imagine waking up in the morning, you've totally lost your hearing.

I wouldn't wish that on anyone.

I'm a person who loved music a lot,

especially gospel from my church so I miss listening to that music.

I had my own favourite songs, 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...

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 to me

it sometimes tells me that it's God's work that I can't remember that knot.

Cos 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.

Cos 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

and 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.

Cos 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 because of TB.

I lost my parents and my sister because of TB.

I've been out of school now because of TB.

I can't enjoy my youthful days cos of TB.

I'm not living like every other people

with their siblings in the same house, cos of TB.

Like, seriously now, how many things are going bad for me just cos of TB?

You see I really don't care about the stigma cos I'm now able

to stay alone.

But like seriously, all these things just cos of TB.

It's not fair.

It's really not fair.

By the end of 2013, XDR-TB cases had been reported in 92 countries.

During the funeral, a fire started inside Bheki's house.

Many of his possessions

and some of his TB medication have been caught in the flames.

While Bheki's world grows darker, there is hope for Nokubhega.

After six months of daily injections her sputum tests are now negative.

Her brother, Melusi, is still at school,

being supported by the church.

He can't afford to look after Nokubhega,

but their church has found a family willing to take care of her for now.

Nokubhega still has at least a year of taking numerous drugs every day,

and if she lapses the disease will come back stronger than ever.

So a normal life, free from the stigma of TB,

is still a long way off.

But things are not going

so well for Nokubhega'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 that is also coming back positive.

They're not changed.

So it show 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 and not change.

So it's true that we know you feel bad, no-one can be ready to be

told that, OK. My results are not bad but that is the reality.

You are not doing OK.

The drug we are giving you are not giving us any change,

as long as when you monitor the bacteria still there always.

You are going to move from this ward to other ward.

Cos 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 a sad - it's a sad news,

I admit, so yes, have your time and we'll talk later.

This is now XDR, that's the information we wanted to deliver to you today.

In the 21st century, we shouldn't have people dying from TB.

Zandile is not isolated case, it's happening very frequently.

It's painful, we, we tried our best to, to save her life but, erm...

..sometimes it happens.

And she was fighting for a - for life,

and her family were fighting for, for life.

The cocktail of drugs Bheki is taking were

developed between 40 and 70 years ago.

New TB drugs are slowly coming to market -

but an effective combination has yet to be tested,

so better treatment is still years away.

PERSON SNEEZES

I feel sorry that in the... in this era of globalisation

we still use old, old drugs and we cannot, erm, eliminate TB.

Nokubhega'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.

Gcebile is still at home, alone, 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.

Six weeks after filming, Gcinekile lost her battle with XDR-TB.

In developed countries, in western countries,

they should be threatened how is the spread of TB.

But there is no global response.

CHILD COUGHS AND CATCHES BREATH

The fact is we cannot choose the air you breathe.

And hence, anyone can get TB, anyone can die from TB.

We are living in the era of globalisation.

So infectious airborne diseases like TB,

is, er, given great opportunity

to spread worldwide very rapidly

and have a huge impact on global public health.