Transcript for Pop!Tech Zinhle Thabethe

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Zinny was diagnosed HIV positive, she is from Durban, South Africa,

diagnosed HIV positive in 2002. With the help of a stranger,

found her way to a clinic where through a series of small miracles

she got access to ART to anti-retroviral therapy. One of a handful of people

to get early access to those medications, in a country with massive

diagnosed number of cases. This is almost a literally one in a million

shot--completely changed her physical health around and today she works

as an advocate for people around the world with HIV.

I knew when we spoke on the phone--I have to tell you this is I

--normally, I want you all to know that Pop Tech runs like a smooth, well-oiled machine

and there are never any errors or confusions or complexities in

bringing all of this together. But I will just tell you this one okay,

which is that on Wednesday--no, Tuesday. On Tuesday, before the conference

Zinny and some of the people you are going to meet in a little while

coming from Durban, South Africa, were going to get on a plane at 1:00 in the afternoon.

And at 12:00 in the afternoon, just as the clock struck 12,

we discovered that neither Zinny, nor any of her folks, had actually cleared her visas.

And we had the embassy in one ear, and we had the whole crew on the other

on their way to the airport.

And I want you to know, that I was having a heart attack right at that very moment [audience laughing]

with Tom. We were like freaking out. We were putting the phone down to curse silently

[Miming cursing silently]

[on phone with officials] "Yes, yes, seriously yes. Let's do that."

[audience still laughing]

Brilliant and sensible plan. The whole team came together.

And my heart is going [miming heart pounding]

I can't believe this. I've told everybody. I can't wait. I know Zinny is supposed to be here.

We've got the TV, everybody is [panic]. And we get on the phone

with Zinny and she's completely calm. She's like "No problem,

we're all getting on the plane. Don't worry it's like 42 minutes from now."

[audience laughing] And now she's here. [audience laughing and applauding]

Zinhle Thabethe.

Zinhle Thabethe - Pop!Tech 2006

Thank you very much, Andrew. In South Africa we are known to be slow movers.

[audience chuckling] And I have actually felt like a real South African

as the conference is going on, and sitting and listening

people are talking technology, people are talking technology with education and all that,

and I'm like, "Hmm, it means us at South Africa, we will be getting there at some point,

but not today, because we are still worried about whether somebody will be sleeping with

food on the table, or whether HIV will have swept the whole country

before the technology gets to us." So today, I just want to talk about

a few ideas that usually strike me as very dangerous.

We are not the same.

Naturally one would think that, somebody from South Africa

and from Peru, and from America, since they are all human beings,

they bleed, they cry, they get emotional, they get happy, they should be treated as the same,

but it doesn't happen like that. And that, to me, sounds like a dangerous idea.

I will talk through this HIV struggle through my family, because that is the safest thing to do,

and it is politically correct, and I wouldn't be held

liable for any saying this and that, which is not good for the government

because it's my family, it's my story, it's me. I think it is safe to talk it that way.

That's my brother, that's my sister. Pinky, on the

left hand side, and my brother, who is late, on the right hand side,

who died from HIV and TB, which are two things that are very close to heart,

and they are my passion. They are my babies.

So, I want to talk through them.

And then in the next picture is me, so that three people in that picture from one family are HIV positive.

So in 2001, I discovered I had HIV, and at that point in South Africa

there was no treatment. Actually the doctor who diagnosed me said,

"Uh, I think you have to try and find something we call medical aide in South Africa,

to get you through this, because if you don't you will be dead in

December." That was in February.

Surprisingly enough, I'm still here talking to you.

I don't know what happened to that idea from the doctor.

So I started getting sick. I got fired from job, because the idea is to,

some employers in South Africa, is that when you get HIV you--

they have to toss the coin thinking about, "Is this going to be a liability,

or is this going to be a human being, or is this going to be an asset."

So I guess I got into the part where they thought, "This is going to be a liability,

so we have to toss her." I was then out of the job.

And then things started happening with my life changing, with

PCP pneumonia, cryptocaccal meningitis, TB three times, and

the whole story was my life just literally became a journal--of opportunistic infection.

And then in the same year they were talking about whether--

the international world was talking about whether could we get medications to developing countries,

to countries like South Africa, and there was an article in the

Boston Globe, by Mr. Natsiois--I don't know whether I am saying it right--

who is an administrator for the U.S. Agency for International Development.

This is how he thought. He said, "Africans do not know what western time it."

"And if you say one o'clock to Africans," talking about us, "they wouldn't know what you were talking about."

That was his idea, and that he said, because this medication requires

somebody to be adherent, and they require time.

If you do not know how to keep time, it becomes difficult.

But maybe that wasn't a very correct idea because here I am, 5 years later

I have been taking my medication on the money [audience chuckles]

24/7, 365 days, and I am doing very well as you can see.

So [audience applause]

I'm going to skip through this one because Andrew did talk a little bit about that,

that it was just a miracle my life has been unfolding as miracle after miracle

which is what brings me here today, because on Tuesday I didn't have a visa

but I knew that it would happen because that's how things are with my life.

[audience laughing and applauding]

So other people were not so fortunate as myself, as we are talking about

6 million with HIV needed treatment in 2004, and

it was not all the 6 million who need it who got it.

It was few of us who were very fortunate, as I'm saying,

and South Africa is the country that has high burden with HIV

with 5 million of the 6 million, meaning

all the rates of HIV are in South Africa, where I come from.

So the World Health Organization thought there should be a goal.

If we roll this in a bigger scale, they made a campaign

saying "3x5", meaning that 3 million of people needing ARV's by 2005,

should be on ARV's. And then in June 2005, this is what was happening.

Only 10% were on ARV's.

And in sub-Saharan Africa, less than 10% is getting the 3x5 thing

that the World Health Organization was talking about.

It is because maybe people are just not the same.

I'm going to talk to you about this child,

and about what HIV is doing to not only human beings,

but also to the culture of South Africa.

90% in South Africa are without medication, including that 12 year old,

who was brought by the family to St. Mary's Hospital.

Because of overwhelming debts, and liabilities, and expenses that comes with it.

they decided, "We are going to go against our culture,

so we will admit this child and we will leave it, and

we will turn our backs and we'll never come back to claim the body to bury,"

because HIV, that's what it does.

It prunes people of humanity, it prunes people of dignity,

and it also prunes South Africans of their cultures,

of loving and caring for their loved ones through death.

We talk HIV, and specifically I'll talk about myself.

HIV/AIDS HIV/AIDS HIV/AIDS

I actually talk HIV, breath HIV, sing HIV, work HIV.....it's HIV, HIV, and

that is why I haven't come to a point where I'm thinking about technology yet,

because it's only HIV. And you talk about this until it blares out into your peaceful night.

You think about it all the time until you just--you're not living anymore.

So let me take you to my lovely home, South Africa.

Despite the fact that we are so much challenged, but we have an opportunity

to play with elephants--Humh--and looking at the Drukunsback mountain,

it's a beautiful country, though it is very much challenged by epidemics

like HIV and TB. I am specifically--I am actually coming from KZN,

one of the 9 provinces of South Africa, and I am currently

based in Pietermaritzburg as you can see in the map,

that's where I am working from.

[Urban Areas (Durban)] And we've got very different scenarios in terms of

geographic area. Urban areas in Durban looks like that.

It's a city and programs get very easily, and people can be able to get to medication,

and on other side of the coin [Semi-rural] the areas like this

which we call semi-rural, which is actually difficult to get anything done there.

[Rural Areas] And also when we go to Rural Areas, which is

vast geographical distances.

So in that area there are no clinics, it is difficult to get into any program,

so it becomes even difficult for those people to access even

very small programs that we have there, designed.

So I'm also going to be taking you through what happens on daily life.

People going to work in KwaZulu Natal--

they get into a truck like that, and if you are looking at the statistics, this is what it says:

Out of those people, 1 in 2 of adults, when we count 1and the next one is HIV positive,

and so forth and so on.

And in the government: ANC clinic, 60% of pregnant women are also HIV positive.

In 2003, in--here in United States, 143 babies are born HIV positive.

And unfortunately in South Africa, that's what happens every day,

200 babies are born HIV positive.

In 2006, these are the statistics that we have been looking at:

80%-90% hospital beds are for HIV infected people,

and hospital morgues overflow--funeral every weekend

and it's going to a point where no neighbor will be helping the other neighbor through

the period of mourning, because you will be mourning yourself.

So cemetaries are also getting full, as you can see.

And we haven't even gotten through the issues of stigma yet in South Africa,

which is still powerful and still living, and which is why the choir is

available to help support those people that are affected by the stigma.

The question will be then, "Why?" are we still feeling, or affected by stigma.

It is because of the idea that goes on increasingly in people's mind that

people are not that same. We do not see each other as the same.

As you can see in that picture, they are probably looking at that woman

and thinking she is somehow different from them.

And my brother and my sister, also affected by HIV, and also myself,

and in this one family, there is this person, me.

My brother died and we were watching it painfully and knowing that

there is nothing you can do.

And how do you live with yourself knowing that you have got something

that could help him, but he is going to die because you're just not the same.

Some people are lucky, some people are fortunate, some are not,

but from the same family, it is actually difficult.

My brother delayed testing as everybody else in South Africa would like to do.

In 2003, he started on TB treatment. He did not get better and he was found

--diagnosed with MDR TB, and he was admitted in a MDR hospital,

and started six very toxic drugs, and improved, discharged to home,

and a few months later he then got re-infected with TB,

and it got worse, and he died.

And it was painful watching that because I knew, in my back

or in my back as I will show you, I had medications that would help him.

This is my pill box and this is my medication.

I had it but I couldn't--I couldn't help him.

And this is the picture showing bags of rices and everything

because we are preparing for his funeral.

And let me talk about the statistics. This is what we are talking about.

We are talking about families. We are talking about human beings.

We are talking about families, like my family.

My brother is HIV negative, my sister HIV positive, I'm HIV positive

my brother is HIV positive. So this is the statistics.

Sometimes when we really talk about the numbers, we lose the connection

that these are actually human beings.

And at the same time we are looking at TB as well.

This is how TB is affecting my family,

together with HIV.

And children's ward in KZN: Children get referred for ARV's.

Most of them have HIV...uh, have TB.

This one particularly will be stabilized on ARV treatment

and then he will be started on ARV's.

And this child on the other side, who as likely had TB as well,

but she was orphaned and she was a little bit sicker,

and somebody decided, "We are not going to waste money on that baby

to put her on ARV's because there is nobody to support her,

and to go through adherence situation, or issues with her."

So she was left to die.

They can never be the same.

One has parents, one is not supported;

therefore, we will give medications to those that we decide

to give to them because of whatever reasons that we think about.

That's human beings.

When "3x5" fails, this is what happens.

And I want to just run through this--

--this few slides, because Serena had touched on TB epidemic

and we, in South Africa, started to--seeing TB rising from 1980's to 2001,

It has been parallely increasing as HIV has also been increasing.

So the rates of--amongst highest in the world of TB in KwaZulu Natal.

USA talks about 6 persons per 100,000 in the inner city,

and we're talking about 1,700 per 100,000 in the inner city.

HIV and TB co-infection rates, from 14%-20% starting on ARV's

have TB. And 70% of TB patients test HIV positive.

And this is how the mens' ward looking like in KZN,

and this is--the majority of them are HIV positive.

And also the female ward looks like this, and within the older females

there is also this child who is watching death, day in and day out

who will be traumatized as she goes through that.

And out of the 53 districts in South Africa, 25 has cure rates of less than 50%.

The TB crisis is increasing.

I don't know whether you did see the papers just in September,

which I'm going to be showing you briefly after this.

TB crisis is actually growing.

We haven't even mastered HIV, and TB is becoming out of hand.

So we're talking about KZN here, eThekwini district is where we come from--Durban.

The cure rate for TB is 32%, and literally we are breeding MDR

and later we are doing XDR. XDR means Extremely Drug Resistant TB.

These are the articles that the World Health Organization has been--

we have been seeing in newspapers on the 8th of September, 2006,

they were talking about increasing rates of XDR, meaning

of 54 people who got XDR who were HIV infected, 48 of them did die.

And it is not treatable and there is not much can be done at this point.

So when you go to the hospitals and ask the doctor,

"Can South Africa achieve TB adherence?

The doctor who works in the ARV program and in the TB program would say,

"No, because TB and HIV are not the same."

And it makes me wonder, why is it not the same because

HIV and TB affect one and the same people,

and all the strategies that I use for HIV can be used for TB.

They are the same. Challenges is limited resources, transportation fees,

no one-stop shopping, ARV adherence, it's the same in the TB program.

But, the doctors will decide--to say, "We can never have an adherence program for TB,

because those are two different things.

So in South Africa, we celebrate starting ARV's because it means that

somebody, like me, who would have been labeled as a liability,

or somebody would be dying in like 7 months, or 8,

will be given life and will be given an opportunity to serve the country,

to save the nation, and to also take care of my children.

This is two program we are going to be looking at:

ARV program on this side, and TB program on the other side.

There is preparation for adherence and support in the ARV program,

but for TB, minimal preparation is done, and there are no DOTS

as they do in Haiti, it is not really happening,

and there is high default rate for TB treatment.

This is me, in MGH, and they happened to have really weird cases

like myself, and they get emergencies, and they put you in such things.

I guess this is what Serena does every time she puts people on those machines.

I was not the same

as many other people. In 2004 we were touring with the choir in Boston,

and then I felt I was a little bit tired,

and I said, "I will just go in and get checked and then continue with my vacation."

And unfortunately, I couldn't go back to where I was staying because

they found, query, TB as they said,

I still felt tired, and I still felt thin and my appetite was not as good as it should be,

so I was admitted in Boston MGH for four months,

because I had a cavity on my right upper lobe,

and I got best care

ever. Everything that needed to be done, was done.

It was not a matter of, "Is she going to live or not."

Everybody tried what it had to be tried to give me an opportunity to live and to be here today.

They used every expensive drug they had, and every test to confirm

it was not TB actually it was scarring,

and the infection that happened just after my other episodes of TB.

On the other hand, in South Africa in the very same year

my mother was coughing blood,

and the hospital sent her home and they said,

"You have a common cold."

And just yesterday I just got an e-mail saying that she has been diagnosed with TB again.

The dangerous idea is that it is human beings that think

or treat other human beings as different, and make us

get different treatments and we set up systems that will be

discriminating other people. We set up systems

that will make me feel I have to be different than my mother,

I have to be different than my sister,

I have to be different than other person else.

It is us as human beings who said those things.

Systems are controlled and made by us,

and it is us that can change that.

In ending this talk I will talk about this hero,

Nkosi Johnson, who died of HIV when he was 12.

Every day he was going through wondering:

Why is everyone treating him differently.

Why is he not allowed to go to school.

Why is he not allowed to get medical care like everyone else.

Why was he not given an opportunity to live like any other child,

and not to be worried about death and everything.

So the book was written about Nkosi Johnson by one of the authors in America,

saying, "We are all the same."

And which is what I believe, if we can go back to thinking

and feeling as you, Serena, have been saying,

that if we treat people like my sister, like my brother, like you would,

or like I would like to be treated, and feeling that we are all the same,

we can move faster in controlling HIV and AIDS. I thank you.

[audience applauding]

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