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Pop!Tech Zinhle Thabethe
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23 minutes and 29 seconds
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United States
Language:
English
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CC Attribution Non-Commercial
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Documentary
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615
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Posted by:
peder on Jun 22, 2007
Zinhle Thabethe has faced the prospect of her own death. Her personal stories about survival and family loss reflect a nation’s epidemic in a sobering and inspirational wake-up call.
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Video Transcription
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- POP!TECH [♪ POP!TECH Theme Music ♪]
- Brings Together
- The World's Leading Thinkers
- To Share Inspiration and Ideas
- Igniting Change
- And Unlocking
- Human Potential
- This Is Part
- Of Their Ongoing
- Conversation
- POP! TECH
- POP! CAST
- Presented by Lexus Hybrid Drive
- Gives More To The Driver, Takes Less From The World
- 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]
- Presented by Lexus Hybrid Drive
- Gives More To The Driver, Takes Less From The World
- The preceding video is licensed under the Creative Commons Non-Commercial ShareAlike 2.5 License
- For details please visit http://creativecommons.org/licenses/by-sa/2.5/
- POP! TECH
- Pop! Tech - For more Pop!Casts, information on Pop!Tech or to learn how to participate, visit www.poptech.org


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