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South African journalist Charlene Smith

South African journalist Charlene Smith writes about the spread of AIDS in Southern Africa. In 1999, she was raped, and feared the man who raped her could have given her HIV/AIDS. Smith had a hard time obtaining the drugs that could lessen the potential of her getting HIV. Smith then wrote about her experience and helped spread awareness about rape and HIV in South Africa. Statistics say every 26 seconds, a woman is raped in South Africa— the country with the fastest growing HIV rate. Smith continues to speak about her experience and is pushing for legal and medical reforms in South Africa. Smith is a repeat Fresh Air guest, first on the show in May 2000.

27:12

Other segments from the episode on June 21, 2001

Fresh Air with Terry Gross, June 21, 2001: Interview with Jon Cohen; Interview with Charlene Smith.

Transcript

DATE June 21, 2001 ACCOUNT NUMBER N/A
TIME 12:00 Noon-1:00 PM AUDIENCE N/A
NETWORK NPR
PROGRAM Fresh Air

Interview: Jon Cohen talks about the search for an AIDS vaccine
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

Next Monday, the UN will begin a three-day special session on HIV-AIDS. And
estimated 16,000 people around the world become infected with HIV each day.
There have been some medical breakthroughs, like the new anti-retroviral
drugs
that are helping extend the lives of many people with HIV, but we still
don't
have an AIDS vaccine.

My guest, Jon Cohen, is a journalist who's been covering the search for an
AIDS vaccine since 1989. His new book, "Shots in the Dark," describes the
mix
of scientific, business, political and ethical forces that have made finding
an AIDS vaccine so difficult. Cohen writes about science and medicine for
Science magazine. He says the first big breakthrough in the search for an
AIDS vaccine came in 1984 when the HIV virus was identified. There have
also
been breakthroughs in our understanding of the immune system. When most
people think of immunity, they think if antibodies, but that's just one
small
part of the picture.

Mr. JON COHEN (Author, "Shots in the Dark"): The most important thing that
has reshaped the AIDS vaccine search is the ability to find killer cells.
Antibodies, very simply, stop things from getting inside of cells. What
happens once a cell gets infected? There's a whole other arm to the immune
system that relies on these Green Berets, essentially, that can find the
enemy
and eliminate it, and those are killer cells.

About 20 years ago, nobody could find killer cells. Now there are very
sensitive techniques to finding those in people, and those have made a huge
difference in the search for an AIDS vaccine.

GROSS: There was a study called the Nairobi prostitute study that tried to
analyze prostitutes who seemed to have an immunity to AIDS, who were exposed
to the virus but seemed to have an innate immunity to it. Can you tell us a
little bit about what's been learned in that study?

Mr. COHEN: Yeah. It's still ongoing, and what the researchers have found
is
that there are women who repeatedly have had unprotected sex who do not
become
infected, over years of being in the business. I met with some of the women
in Nairobi--I went to their homes, I went to brothels--and it's clear that
they're terrifically poor. They live, sometimes, in mud huts, and they have
sex for about $1, five, 10 times a day, even. Then they receive education
from the researchers about condoms and also about female condoms; I went to
a
brothel where they received a lesson about the female condom. Yet some of
these women don't use protection and do not, upon repeated exposure to HIV,
become infected.

Studies of their blood have shown that they do recognize the virus; in other
words, they've seen it, and they've mounted an immune response to it, and it
ultimately leads back to killer cells, and people are trying to design
vaccines that exploit that.

That group in Kenya is but one group of what are called exposed, uninfected
people around the world, and there are several groups of exposed uninfected
people who've never been studied. I mean, they're hard to identify. You're
kind of looking for something that you can't see.

GROSS: So is the theory that this has to do with those killer cells, those
Green Berets that attack the virus...

Mr. COHEN: Yeah.

GROSS: ...once it's entered the cell?

Mr. COHEN: Yeah. And the theory is, is that they, through whatever
mechanism, learned how to beat the virus at its own game. And there have
been
a few sobering things that have happened over the past couple of years. A
few
of these women who were thought to be protected became infected. So it's
not
a guarantee. But then think about the vaccines in us. The vaccines we
have,
they don't guarantee we're not going to get the diseases. What they do is,
they increase our odds that we're not going to get a disease. That's all
vaccines do. Many of them increase our odds tremendously, but that's all
they
do. These women have much better odds of not becoming infected, and I still
think there's a lot of mystery as to why that is, and I think there's a lot
of
opportunity to find more people like this and tease out more mechanisms that
lead to their resistance.

GROSS: And what are some of the other scientific roots being explored in
AIDS
vaccines?

Mr. COHEN: There are basically two schools of thought. One school of
thought says understand the mechanism to the finest detail and then try and
build a vaccine that makes the immune system do what you want. Another
school
of thought is much more trial and error. It's imperical. It says let's
test
vaccines in monkeys, see what works and then move those forward. So both of
those approaches are happening right now. The more mechanistic approach
uses
lots and lots of fancy tools and techniques to make things happen that may
or
may not work ultimately, but they're pretty swift-looking and they sell
pretty
well on Wall Street if you have a biotech company. I don't mean to be too
cynical, but I think that there's truth in that.

GROSS: I'm surprised that there's still vaccines that are working with
monkeys because I thought HIV affects monkeys differently than it does human
beings.

Mr. COHEN: It's a good point. HIV itself does not infect monkeys, but
there's a monkey cousin of HIV called SIV, the simian immunodeficiency
virus.
And when that is put into Asian monkeys, it causes AIDS in the monkeys. And
there's another virus that's been made in the laboratory that combines SIV
and
HIV. It's called SHIV, S-H-I-V. It also causes disease in monkeys. So
what
researchers do is they make vaccines from SIV or SHIV and then they give
those
to monkeys and then they put the virus into them to see whether the monkeys
can either completely defeat that infection or become infected and slow the
progression of disease or not become sick. And that's the main way that
AIDS
vaccines are tested today.

GROSS: What are some of the scientific reasons why an AIDS vaccine is so
much
more difficult to find than say the polio or the smallpox vaccine was?

Mr. COHEN: I'm glad you asked that because I think a lot of people skip
right
over that central question. With polio, antibodies clearly protect people
from polio virus. With HIV, no one knows what clearly protects people.
There
are clues. Maybe it's antibodies, maybe it's killer cells, maybe it's a
combination of antibodies and killer cells, maybe it's something else
entirely
different. Another thing that distinguishes the search for an AIDS vaccine
from the search for the smallpox vaccine, which is a great example, is I
think
sometimes scientists can become bamboozled and confused by all that they can
know rather than what they need to know. Edward Jenner, who made the
smallpox
vaccine, noticed that or knew the folklore that dairy maids who got cowpox
didn't get smallpox. He took cowpox from a dairy maid, put it into a little
boy, then put smallpox into the little boy. Now that's completely
unethical.
You couldn't do that today. But that's how the smallpox vaccine was
discovered. Edward Jenner didn't know that viruses existed, let alone an
immune system. It was completely trial and error.

GROSS: Since HIV attacks the immune system, is the typical immune response
from a vaccine not something that you can work with for an HIV vaccine?

Mr. COHEN: Yeah, it's tricky. I mean, HIV, I describe it as the arsonist
that attacks the firehouse. Because it has evolved to duck and dodge the
immune system, it does make it trickier to make a vaccine. It doesn't mean
it
can't be done, but it's certainly not as straight forward as a virus that
doesn't attack the immune system.

GROSS: Let's look a little bit at the funding issues. Have the
pharmaceutical companies invested as much in experiments to find an AIDS
vaccine as they have in experiments to fund drugs that fight AIDS?

Mr. COHEN: No, I think that's a central problem to the AIDS vaccine
enterprise. If you look at anti-HIV drugs, there are 14 different drugs on
the market made by 10 big pharmaceutical companies. There are only four big
pharmaceutical companies that even make vaccines, and I would argue that
only
one of them has a serious AIDS vaccine program, and that's a recent
development. So big pharma has, by and large, shied away from the AIDS
vaccine field. There's a pretty simple calculus to figure out why they
haven't run into it. Partly it is the science. Certainly it's difficult.
But the other part is the entire vaccine marketplace for all vaccines that
are
now sold in 1999 is estimated to have been $4 billion. A best-selling drug
that year could have brought in $5 billion, one drug.

GROSS: So who is funding AIDS vaccine research now?

Mr. COHEN: In the mid-1990s, several institutions and organizations and
researchers recognized that there was a market failure. One thing that
happened was researchers banded together and formed the International AIDS
Vaccine Initiative, which is a non-profit based in New York that merges
biotech companies with researchers from both poor and wealthy countries to
make AIDS vaccines for poor countries. The National Institutes of Health in
the US is the single largest funder of AIDS vaccine research. It spends

more
than the entire world combined. You can't underestimate what it does. It
revamped itself in the mid-1990s to become more like industry in many ways,
to
move vaccines out of laboratories and into people. European Union has
gotten
together and formed a EuroVac, another consortium of researchers. The Bill
&
Melinda Gates Foundation has funded the International AIDS Vaccine
Initiative
to the tune of $126 million. I think that's more than all of Europe has
spent
to date on AIDS vaccine research. There's a lot of good stuff happening
right
now. I don't think it's enough, but certainly things are turning around for
the better.

GROSS: My guest is journalist Jon Cohen. His new book is called "Shots in
the Dark: The Wayward Search for an AIDS Vaccine." We'll talk more after a
break. This is FRESH AIR.

(Soundbite of music)

GROSS: Jon Cohen is my guest. He writes for Science magazine, and he's the
author of the new book "Shots in the Dark: The Wayward Search for an AIDS
Vaccine."

What are some of the ethical problems that scientists are running into now
who
are trying to come up with an AIDS vaccine and need to find people to test
it
on?

Mr. COHEN: Well, the ethical precepts should be the same all around the
world. The reality is that there are different standards in different
places.
I'll give you a strong example. In the United States and Europe right now
in
their HIV vaccine during the trial--not from the vaccine, but you get
infected. The vaccine didn't work, let's say, or let's say you got the
placebo, the dummy shot, you get infected. The odds are that you're going
to
be able to get drugs to treat your HIV infection.

What happens in Africa when you're in an HIV vaccine trial and you become
infected--it's not the fault of the vaccine, but you become infected--well,
are you going to be able to get drugs? Probably not. And that fact makes
it
much simpler to analyze whether a vaccine works or not. In other words, if
you're in the United States, Europe, Australia, you're in a vaccine trial,
you
get infected, you start taking drugs, how can the researchers tell whether
the
vaccine is keeping you healthy or the drugs are keeping you healthy? It
becomes a muddy picture, while in Africa, it's pretty clear cut. You got
infected, then I can just look at you and I can look at the people who got
the
dummy shot and decided whether it helped you at all. So actually, it's a
huge
ethical problem and people are really struggling with that right now.

GROSS: So the question is: Should the people who are participating in
vaccine trials in developing countries have the right to AIDS drugs if they
do
contact AIDS...

Mr. COHEN: Right. But then you...

GROSS: ...even though other people around them aren't probably getting
those
AIDS drugs?

Mr. COHEN: That's right. And that raises another thorny ethical issue,
which
is: Is it undue influence to encourage them to join a trial, to volunteer,
if
they know that they're going to get drugs if they become infected? Now
think
about it. If you live in South Africa where 20 percent of the adults are
infected--well, that's pretty attractive. `If I get infected--which I've
got
a one in five chance of it happening, anyway--I'm going to get drugs if I
join
this trial.' Well, that violates ethical principles.

GROSS: So what other countries in which vaccine trials are currently under
way?

Mr. COHEN: There have been about 50 HIV vaccine trials that have started
around the world, and it's a three-phase process. Only one vaccine has
moved
all the way to the final stage of testing. That's being tested in the
United
States, Canada, Europe and Thailand.

GROSS: And is this a promising trial?

Mr. COHEN: Most researchers have no hope whatsoever that it will work.
There is a small group of researchers who believe in it, but the US National
Institutes of Health decided in 1994 that the results were so mediocre from
early trials in humans to not even move it forward with US government
funding.

It also--unlike several other vaccines, it hasn't succeeded in monkey tests.
It has succeeded in a few chimpanzees, but nobody even does AIDS vaccine
testing in chimps any longer. Chimps and monkeys aren't the same, by the
way,
just so that you know the distinction.

GROSS: So what do you think is the best hope for an AIDS vaccine?

Mr. COHEN: Well, what I'd like to see happen--I think the great failure of
the enterprise as a whole is that it hasn't fully exploited the monkey
model.
I'd like to see every good idea tested in a head-to-head comparison in
monkeys, and then move the ones that work the best forward. It's logical,
it's simple, it's been called for by leading scientists for a decade at
least.
It hasn't happened yet. Right now you can't even compare monkey data from
one
laboratory and another. They use different strains of SIV to test the
vaccines. They have different protocols. They use different places to put
the vaccine in, different places to put the virus in when they challenge the
animals. It makes me dizzy when I look at that field.

I think that it would behoove the world greatly to organize a master monkey
trial, and then to pick the ones that look the best, move those forward with
little concern for why they worked. We can figure that out after the fact.

GROSS: How does the future of the epidemic look with an AIDS vaccine and
without an AIDS vaccine?

Mr. COHEN: Well, drugs aren't going to stop the epidemic. That's not going
to happen. Drugs are kind of a wash. I think we've seen that in the United
States. When you look at sheer numbers of people who are infected, drugs
are
going to keep people alive longer. They're going to remain infectious. And
you're not going to slow the transmission with drugs alone. That's not
going
to happen.

Drugs also are never going to get, in my mind, to the poorest parts of the
world. We only need look at other diseases to see the problems there.
Malaria and tuberculosis--those diseases are still raging. There are drugs
that treat both. In fact, there are drugs that cure tuberculosis that don't
get to people who need them.

We know that vaccines are the most powerful medical tool--they're the most
powerful medical intervention, other than cleaning the water, that we've
ever
come up with as humans. We know that the small pox virus now only lives in
laboratory freezers. That's it. We got rid of it with a vaccine. That's
what vaccines can do. If we had a powerful AIDS vaccine, it could send the
virus into laboratory freezers, ultimately. It will take time, it will take
decades, but it could happen. That's the promise.

And another sobering thought is if you have a mediocre AIDS vaccine
today--this is a calculation done by the National Institutes of Health in
the
United States--that works 60 percent of the time, six-zero, it will do more
good 10 years down the road than a 90 percent-effective vaccine introduced
five years later. So that's a lesson from the past that we ignore, too.
Polio vaccines, the first Salk vaccine, it only worked in, at most, 70
percent
of the people. Only 70 percent of the United States population went to get
it. Between 1955 and 1961, polio in this country dropped more than 95
percent. Mediocre vaccine, mediocre coverage. Vaccines can create great
good
without having a great vaccine.

GROSS: There's a UN special session on HIV-AIDS scheduled for June 25th to
the 27th. What's that about?

Mr. COHEN: It's largely about--in my mind, the success with drugs has led
to
this question of why don't we have drugs everywhere? I think that's been a
trigger for this. It's thrown into relief the disparity that exists in
different parts of the world. And that opens the door to a whole bunch of
other issues like treating people fairly who have different sexual
preferences, treating women fairly who do not have the power that men have
in
different cultures. And it goes on and on and on from there with all these
non-governmental organizations coming forward with their own agendas. I
think
it's certainly a good thing to encourage leaders in many countries to take
HIV
and AIDS more seriously. I think it also is a good thing to create a global
fund to purchase drugs for poor people around the world.

So I'm not negative or cynical about it in and of itself. I think it can do
a
lot of good. I'm amused at the way that vaccines take such a back seat in
this whole operation, and how very few people think critically about that
enterprise. And I've been following all the chat rooms that are in
anticipation of this debate, and there's hardly any mention of vaccines.

GROSS: Would you think it's because people are giving up on it?

Mr. COHEN: No, I think it's because people don't think much about vaccines.
You know, people worry more about what's happening to them than they do
about
what might happen. I don't think people in the United States would wear
seat
belts to a high degree if we didn't have laws that punish people who didn't.
I mean, you see that in states that don't have seat belt laws. And people
wouldn't vaccinate their children in this country if we didn't have laws
that
prohibited children from going to school who don't get vaccinated. So I
think
there's a simple problem with preventive medicine vs. helping people who are
sick. I think that's at the root of it.

And then there's this other thing that's curious to me, and it has to do
with

vaccines sort of being an invisible medicine. You know, most of us get all
of
our vaccines by the time we're five years old. We've never seen polio,
diphtheria, tetanus. We haven't seen these things. We're not afraid of
them.
And we don't think about the fact that we're protected from them. We just
are. So I don't think that they're high in our consciousness. I don't
think
it's something we think about much.

GROSS: Now you mention that the Salk vaccine and the Sabin vaccines against
polio were funded by the March of Dimes, which was the idea of FDR. Is
there
anything now that you would compare to the March of Dimes?

Mr. COHEN: I think the International AIDS Vaccine Initiative is built on
that model. The EuroVac network in Europe is built on that model. I don't
think either organization is anywhere near ambitious enough or tapping into
the public in the way that the March of Dimes did.

That's another huge aspect to all of this. Most people in wealthy countries
really don't know HIV and AIDS. They haven't feared it. The way people
feared polio was whipped up by the March of Dimes, but it was real, too.
Everyone knew someone who had been paralyzed by polio or who had died from
polio. I think a lot of people in wealthy countries really don't know
people
who have suffered from AIDS, or if they do, it's sort of one or two steps
removed. It's not a brother or sister, a mother, a father. It's not the
same. It's behaviorally transmitted. It's not casually transmitted. And
that leads a lot of people to feel as though if you get it, you know, it's
your fault. And I think that's completely wrong, but I think that's how a
lot
of people view it. And I think that feeds in, too, to the public's appetite
for information about it, is they don't really fear it enough.

GROSS: Well, Jon Cohen, I want to thank you very much for talking with us.

Mr. COHEN: Thanks so much for having me, Terry.

GROSS: Jon Cohen is the author of the new book "Shots in the Dark: The
Wayward Search for an AIDS Vaccine." He writes about science and medicine
for
Science magazine.

I'm Terry Gross, and this is FRESH AIR.

(Soundbite of music; credits)

GROSS: In southern Africa, rape and AIDS are horrifically intertwined,
causing the deaths of thousands of young girls. We'll talk with South
African
journalist Charlene Smith, who was raped two years ago and has been writing
about the epidemic in southern Africa ever since.

(Soundbite of music)

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Interview: Charlene Smith discusses her efforts to publicize the
plight of AIDS victims in southern Africa
TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

My guest, Charlene Smith, lives in a part of the world that had been most
hard
hit by AIDS, sub-Saharan Africa. Two-thirds of the people infected with HIV
live there. Smith is a journalist who has been covering the epidemic in her
country, South Africa, as well as other countries in the region. She was
afraid she had become infected herself a couple of years ago after she was
raped by a man who broke into her home. Since then she's not only written
about AIDS, she's become a consultant to South Africa's Medical Research
Council on HIV and the AIDS Vaccine. Her new book about sexual violence and
HIV will be published in South Africa in August. I asked Charlene Smith to
give us an overview of the impact AIDS is having on southern Africa.

Ms. CHARLENE SMITH (Journalist): The extent of AIDS in southern Africa is
devastating. We've lost 17 million people over the last decade. In South
Africa alone we lost 250,000 people last year. It's expected that there'll
be
more than five million infections in this area alone this year. In Africa
we've got six times more girls infected than boys. The highest rates of
infection are in girls age 13 to 19. And overall in Africa, we're seeing
that
the people who are most infected are teen-agers.

GROSS: Now you live in a big city. You live in Johannesburg. And you've
also traveled around to the villages and to the countryside through southern
Africa. I'd like to ask you to choose one of the villages that you visited
and describe a little bit the impact of AIDS that you witnessed.

Ms. SMITH: OK. Well, for example in Port St. John's, it used to be a very
popular coastal town. There you have a situation where people are so poor
that they can't even travel to the clinics that have medicines. The local
clinic there, all it has in stock is parasitamol(ph), ginten violet(ph),
which
they use to treat thrush and which is basically useless for thrush, and
crepe
bandages. They don't even have anything like Band-Aid. Because poverty is
so
acute, in the afternoons after the children finish school, you get girls
from
the age of 12 who sell their bodies to tourists for food or to pay school
fees
or to pay for medication for their parents if they're able to access
medication, or even just to be able to get enough money to get bus fare into
the local town to take people to hospitals.

Tuberculosis programs in that village have broken down, as they have all
over
the country. The problem being that with TB medication, which is exactly
the
same as with antiretroviral drugs, if you don't have anything to eat when
you
take the drug, it makes you profoundly nauseous, so because people are so
poor
and they don't even have a spoon of porridge or a slice of bread to consume
with the medication, they're not taking the medication, the consequences of
which are that we have one of the worst rates of tuberculosis in the world.
Most of the AIDS-related deaths in South Africa are from tuberculosis.
That's
what you'll probably see on the death certificate. And because we are
getting
such high failure rates in people taking the medication, we've got the
world's
fastest-growing strain of multi-drug-resistant tuberculosis, which costs
something like 10,000 times more to treat than normal TB.

GROSS: You're talking about tuberculosis. I've read that AIDS is really
increasing the problem of tuberculosis because people infected with the TB
germ and HIV are 30 times more likely to become sick with tuberculosis than
people infected only with tuberculosis, people don't have HIV. So the
spread
of AIDS is also increasing the spread of tuberculosis.

Ms. SMITH: Two-thirds of the population of South Africa already carry the
TB
bacteria. However, TB doesn't become full blown or doesn't manifest until
your immune system is depressed, and obviously HIV sees that happen. And it
accelerates the virus in people so they're more likely to die quickly. And
certainly if they can't take the medication, what we're seeing is just
tuberculosis has become absolutely rampant. And within four years' time,
according to the World Health Organization, we're going to have more
multi-drug-resistant TB than any other form of TB.

And also, that carries an acute warning for us, because we are looking at
antiretrovirals. I personally am in favor of antiretroviral medication
being
given to the population. But we cannot given antiretroviral medication to
our
population or any other population in Africa unless it is accompanied by
food
relief. You cannot do it unless you're giving people food.

GROSS: You mentioned that the population that's most hard hit right now by
AIDS in southern Africa is girls of the age of 13 to 19. Why does that
group
have the highest rate of infection?

Ms. SMITH: I think there's a whole variety of factors. Sexual initiation
in
Africa anyhow is at a very young age. Children in South Africa tend to
become
sexually active by the age of 12. But already you have a very serious
situation with regard to rape, very high incidence of rape. And we have an
unimaginable problem with virgin rape. But basically girl children don't
have
much of a right to say no, and even adult women-children don't have the
right
to negotiate sexual relations. There's a very high tendency among men and
boys in not only South Africa but in southern Africa and Africa to take what
they want when it comes to sex. A woman who says no risks a beating, and
this
has been documented all across the continent.

But you also have many--because of poverty, as I was mentioning earlier,
girls
will sell their bodies or they will trade sex for someone who'll pay for
school fees or pay for food, or you even get some girls who, wanting maybe a
nice dress or something like that, so they'll trade sex for that.

GROSS: You mentioned virgin rape is a particular problem.

Ms. SMITH: It's an absolutely huge problem and it's completely, completely
out of control. Because we're failing to give treatment--and this is where
it's really important. You cannot have prevention without treatment
programs,
otherwise the one will sabotage the other. Because we have no treatment or
very, very little treatment for people who are infected, a myth has
developed
that if you rape a virgin, you will cleanse yourself of HIV, and so across
southern Africa we're seeing an unbelievable incidence in the rape of
virgins.
In Zimbabwe, as an example, the highest incidence of rape is in girl
children
under the age of four. In Botswana over 1998 and 1999, they reported that
the
rape of girl children under the age of 12 had risen 65 percent. In South
Africa child rape, particularly the rape of children under the age of 11,
more
than doubled last year.

And in terms of the myth, there's also a belief that if the woman is very
old,
say from her 70s onwards, she's the equivalent of a virgin because she
probably hasn't had sex in a number of years. So very high incidence of the
rape of very elderly women as well, very often gang raped. In certain areas
of the country what we are also seeing is a belief that if you sodomize a
child, a boy or a girl child, they remain a virgin longer, so you can
repeatedly sodomize them to try and cleanse yourself of HIV.

And the absolute disgrace about this is that every government in this region
knows that it's happening and is not doing anything to either advertise it,
say that you can't--that this isn't true, that you can't cleanse yourself of
HIV by raping a virgin. And neither are any of the international agencies
doing anything about this. UNICEF knows that it's happening, UNAIDS knows
that it's happening, the World Health Organization knows that it's
happening,
and we have this dreadful, dreadful silence, and unimaginable numbers of
girl
children in particular being infected.

GROSS: Are you saying there's no attempt to educate people at all about
these
myths?

Ms. SMITH: Nothing.

GROSS: How did you first learn about these myths?

Ms. SMITH: We started picking it up in rape clinics and then increasingly
started hearing from people in the townships and in the rural areas, young
people in particular saying that there was this belief that if you raped a
virgin you'd cleanse yourself of HIV. And then I and others began talking
to
traditional healers, or songomas(ph), and asking them about that. Women
traditional healers and songomas are particularly angry about it and have
been
saying that it's absolutely not true, that you cannot, but they admit that
in
very many quarters that there's this belief. And it comes out of
traditional
African cleansing beliefs, that if you have a problem, that you can cleanse
it
by having sex with a very young girl. It's believed in many quarters if you
have sex with a young girl, it can bring you luck. So it comes out of many
of
the cleansing beliefs where you can use sex as a way of cleansing yourself.

GROSS: My guest is South African journalist Charlene Smith. We'll talk
more
after a break. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is Charlene Smith. She's a South African journalist who
has
written extensively about AIDS. In fact, she has a book about to be
published
in South Africa about AIDS and sexual abuse. She's also a consultant to
South
Africa's Medical Research Council on HIV and their AIDS vaccine.

We were talking about how hard hit girl children are by the AIDS epidemic.
There's also a lot of children who have been orphaned by AIDS. What are
some
of the problems in South Africa as a result of that?

Ms. SMITH: Well, what we're seeing on the streets is increasing numbers of
street children, as an example, but the problem with regard to orphans isn't
manifesting visibly in the cities yet. According to UNAIDS statistics, we
have at least 250,000 AIDS orphans here, and this region within the next 10
years will have 40 million AIDS orphans. Not a single country in the region
has a policy for AIDS orphans. The United Nations Security Council, when
they
met in February last year, warned that AIDS posed a global security threat
to
the world, and quite frankly, it's going to come from AIDS orphans, where we
have all of these children who see their parents die, first the one parent,
then the second parent, then other family members. They're isolated by
communities.

We'd hoped and we'd believed initially that the extended family would take
these orphans in. It's simply not happening. It's not happening for two
reasons. One is the amount of stigma and discrimination around HIV-AIDS,
but
probably more powerfully is the tremendous poverty of most of our people
where
they simply cannot afford another mouth to feed. I know a young man who
lives
just outside of Johannesburg in a township. He's 26 years old. He is the
sole breadwinner for 18 people.

On the south coast of South Africa, when I was traveling around, as an
example, there was an instance where a mother had died, leaving four
children.
It took six weeks to bury her because no one could raise enough money to
bury
her. The eldest child is eight years old. He has been left to care for a
five-year-old child who has tuberculosis and is probably HIV positive, and
two
one-year-old twins that are HIV positive. What's happening in the community
where he lives is that some of the villagers will occasionally leave a
little
bag of food at night for him and the children, but they don't give it to him
or them directly because they don't want to be seen to have anything to do
with children who come from a household where the mother died of AIDS, and
villagers know it's probably likely that the children are infected as well.

And this eight-year-old isn't infected and one can only imagine the profound
psychological damage to this little boy watching all these people die around
him and being absolutely powerless. But there is nothing--there are no
support groups or programs to help these children.

GROSS: Let's talk a little bit about drug availability in southern Africa.
I
think some of the pharmaceutical companies have recently agreed to provide
discounted AIDS drugs to the area.

Ms. SMITH: Yes, they have. It's a process that's actually been going on
for
some time. Initially Glaxo Wellcome, as they were called at the time, two
years ago offered us AZT at 70 percent below the world price. Government
refused to accept that. Last year at the World AIDS Conference, nevirapine
was offered to us free to stop mother-to-child transmission, and not only
free, but they said that they would deliver it to all of our clinics, which
would mean that we would have better access to nevirapine than any other
drug
in this country, and government refused that again.

GROSS: Why did the government refuse the drug?

Ms. SMITH: We don't know. Initially they said that the antiretrovirals
were
toxic. Then when evidence was produced that they weren't toxic, they then
said that they couldn't afford them. Then when the drugs were offered to
them
for nothing, they said, well, they wouldn't want to start testing every
single
mother because that might be seen as discriminatory. So at the AIDS
conference itself, the scientists of the world said, well, then give it to
every single baby born in South Africa regardless of whether you test the
mother or not. It's just a single dose to baby and a single dose to mother.
There's no side effects with such a small dose. It won't harm any of the
babies, and government again refused that.

They then conducted their own trials into nevirapine. It was found to be
successful, and they have now started the slow roll-out to 5 percent of our
mothers and babies. But government has made it quite clear that we will not
get antiretrovirals for all of our people, and I think that's why some
businesses have come in and are starting. But it's a very, very small
percentage of businesses that are doing this, are giving it to some of their
workers, because they realize that the losses of the number of their
workers,
they will never, ever be able to replace all the people that are dying in
their work forces and already starting to die.

GROSS: President Thabo Mbeki of South Africa has said that he doesn't
believe
that HIV causes AIDS. Where does he stand on that now? Has he revised
that?

Ms. SMITH: He is now saying that he never said that HIV doesn't cause AIDS.
However, he also will not say that HIV causes AIDS. And I think the fact
that
we are seeing so little in the way of treatment extended to our people when
we
have such unbelievable mortality figures, the incredible denial that we have
in our society shows that we are still in denial about HIV. We had a woman
parliamentarian approximately two weeks ago talk in parliament about the
fact
that her daughter was HIV positive. She belongs to Mr. Mbeki's political
party. And she said to me afterward, she said, `Charlene, you cannot
imagine
the number of parliamentarians who came to me and disclosed privately to me
that they are also HIV positive.'

So we have a tragic situation. We watch people get thinner and thinner and
thinner in government and in parliament, entertainers, sports people, and
then
they die, and it's often listed as dying of a mysterious illness, and we all
know what they're dying of. And I think this failure to talk out about HIV
also promotes stigma, because there's such fear about talking about the fact
that you're HIV positive. Instead of saying HIV is a terminal illness, it's
a terminal illness like diabetes or like heart problems, you can manage it,
you can have a good life, you don't need to go onto the drugs immediately,
if you eat carefully, if you watch your lifestyle, you can be safe. But
instead, we're not speaking about it, and it's criminal. I think it's
genocidal.

GROSS: You've painted a pretty despairing picture of AIDS in southern
Africa
now. I'm sure on your travels through southern Africa you've met a lot of
people who you consider to be heroes in the fight against HIV. Tell us
about
one of those people.

Ms. SMITH: Gosh, there are so many. I think for me the people who I call
the
angels of southern Africa are the volunteers who are usually people who are
unemployed themselves. They volunteer to go to the homes of people who are
HIV infected. They sit, they speak with them, they'll clean their huts.
They're just remarkable. If I think of--and you ask for a specific example.
One that comes to mind is a woman called Bernadette Trumasuro(ph), who is
with
an organization called The Family AIDS Care Trust(ph) in Masvingo, in
southern
Zimbabwe. She lost her sister to HIV in 1989 and pledged to her that she
would continue working in that area. She's a woman of 33. She isn't
married
herself. She's adopted 14 AIDS orphans, eight of whom are infected. She
pays
for their own schooling herself. She runs sewing projects for women,
gardening projects.

One of the problems with regard to women in Africa is their difficulty to
negotiate sex, so many programs try and find ways to help women to earn some
money, so if they become the breadwinner in the family they are more likely
to
be able to negotiate sexual relations. And Bernadette does this
unbelievable
work. She has only in the last two years started receiving a small stipend
from an Irish organization. She lives in a tiny little three-roomed house
with 14 children, and I just think she is one of these heroines. And we see
the Nobel Peace Prize every single year going to all these wealthy
organizations and presidents who are doing what they should be doing anyhow,
but these are the real heroes of the world and of southern Africa.

GROSS: My guest is South African journalist Charlene Smith. We'll talk
more
after a break. This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is South African journalist Charlene Smith. She's been
covering the AIDS epidemic in southern Africa.

One of the things you're doing is you're a consultant to South Africa's
Medical Research Council on HIV and the AIDS Vaccine. What is the state of
research now on the AIDS vaccine in South Africa and what kind of testing is
being done?

Ms. SMITH: Testing hasn't started. They want to start Phase I trials early
next year. They are extremely important trials. We have got clade C, or
sub-type C, in southern Africa, which is the sub-type of the virus that has
killed more people than any other sub-type. In the States and Europe,
you've
mostly got sub-type B, and that's where most of the AIDS vaccine research
has
been into that. This will be the world's first vaccine research into
sub-type
C. So it's absolutely critically important.

One of the issues that we are deciding on at the moment, or that the Medical
Research Council is deciding on at the moment, is who will take part in the
initial trials. There's such fear around AIDS that many people are anxious
about the trials. There needs to be a vaccine education program, which we
hope will start in the second half of the year so that people are more
(unintelligible) about a vaccine, and also so that they realize that if we
find a vaccine, a vaccine isn't the cure. It'll still be approximately
seven
to 10 years before we find a vaccine, if ever, and as has been found in the
United States, even if we find an effective vaccine, a vaccine that's
effective in trials, if people don't change behavior patterns, a vaccine
that's effective in trials will be rendered almost useless in actual fact.

GROSS: Why would the effectiveness of a vaccine be so dramatically
decreased
if people don't change their behavior? Wouldn't they still be immunized?

Ms. SMITH: No, because that's the interesting thing about the HIV virus, is
that it continually mutates. And if, say for example, I received a vaccine,
no one knows if it's possible to get a vaccine that will go across these 11
main sub-types. No one knows if it's possible to get a vaccine that will go
across all of those sub-types. So if we find a vaccine for clade C in South
Africa and it's effective in trials, A, if we don't stop promiscuous
behavior,
that causes a problem. For example, I might then have unprotected sex with
a
person who has sub-type B or sub-type D. I then get infected with that
sub-type of the virus. So I'm not protected against sex with that person.
And the danger is, is that people, once vaccinated, if there's an effective
vaccine, will think that this means that they can then start having unsafe
sex, which actually, because of the nature of HIV, we're probably going to
have to practice safe sex for a long time, even when we have a vaccine.

GROSS: You were raped a couple of years ago and were afraid that you might
have caught HIV from the man who raped you, and so you took anti-HIV drugs

for
a while just in case your rapist was HIV positive or, you know, did have
AIDS,
and it turned out that he didn't and that you were safe, but you didn't know
that for a while.

Ms. SMITH: Well, we still don't know whether or not he had HIV. He's never
been tested.

GROSS: Oh, I'm sorry.

Ms. SMITH: No, that's OK. He's never been tested, so we don't know whether
or not he had HIV at all, but at least I was fortunate. And one of the, I
suppose, advantages about that is the resulting uproar that happened has
seen
dramatic changes in the treatment of people who are raped, but still not
good
enough. Certainly many of our private hospitals now give free rape care,
free
antiretrovirals to very poor people who cannot afford treatment. They give
free testing and free counseling. We are seeing changes in laws. There is
a
new law that's coming out that will now allow a rape survivor to request
that
the person who rapes her gets tested and that she be informed of his status.

GROSS: When you were raped and were afraid that you had HIV, did you, like,
make a pact with yourself that if you survived this, you would dedicate your
life to reporting on AIDS? Because you seem to have just gotten so deep
into
the subject, just thrown yourself so totally into it.

Ms. SMITH: Yes. Yes, I have. I think that I was lucky to live. The whole
time during the rape I believed that I was going to be murdered. I kept
thinking to myself, `Is this what it's like just before you're killed?' I
kept waiting for him to stab me. And actually when he did stab me, I can't
remember him stabbing me because I think my mind registered that it was
non-lethal. But afterwards, yes, I very strongly felt that I had to give
something back, and particularly when I saw what was happening to so many
women and children, that I thought, `This is unforgivable. We have to stop
it.' And if I was lucky enough to be given the chance to live, then I've
got
to do something to help people who are either experiencing sexual violence
or
who are at risk from HIV or who have HIV.

GROSS: Charlene Smith, thank you so much for talking with us.

Ms. SMITH: Thank you, Terry.

GROSS: Charlene Smith is a South African journalist. Her new book, "Proud
of
Me: Speaking Out Against Sexual Violence and HIV(ph)," will be published in
South Africa in August. A UN special session on HIV-AIDS begins Monday.

(Credits)

GROSS: I'm Terry Gross.
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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