[procaare] Africa: Putting Human Faces on HIV/Aids

["AllAfrica.com" <procaare@healthnet.org>]

Africa: Putting Human Faces on HIV/Aids
allAfrica.com INTERVIEW: 19 May 2008
Cindy Shiner
***************

The widely acclaimed book, 28: Stories of Aids in Africa, has been 
highly praised for humanizing the story of HIV and Aids in Africa 
for readers around the world. The book tells the stories of 28 
people affected by the virus - one for every million of those 
believed to be living with HIV in sub-Saharan Africa. Stephanie 
Nolen, author of the book and Africa bureau chief for the Toronto 
Globe and Mail, told AllAfrica's Cindy Shiner that her goal was to 
help readers get past the statistics and to put a human face on 
those 28 million people.

WHAT DID YOU HOPE TO ACHIEVE BY WRITING 28?

It's easier to care about this issue when you start to see those 
affected as individual people and to understand that it is every 
bit as disturbing to hear the news that you have HIV in a little 
counselor's office in Malawi as it is in New York or London or 
Toronto or Sydney.
I was writing for a northern, or developed world audience, trying 
to get them past the lack of engagement with this issue, which I 
think sometimes comes either from being paralyzed from the 
statistics or from thinking, "Well, sure Aids in Africa is bad but 
it's just one more bad thing in a place full of bad things so it's 
really not any different." [I wanted] to say actually that all of 
those [living with HIV] are people with families, people who had 
dreams and ambitions, people who would be as terrified by this news 
as you would be.

HAVE YOU SUCCEEDED IN DOING THIS? AND IF SO, HOW DO YOU MEASURE IT?

I have no idea, I think because it's almost impossible to measure. 
The ultimate goal was a broad change in Western public opinion and 
I don't know how one would assess that.
The response to the book has been quite gratifying. It's been 
published in 13 or 14 countries in a number of different languages 
and I've received lots and lots of mail from readers and really 
good attendance in places where I've spoken about it, either by 
myself or with people who were featured in it. So that's heartening 
because your gut feel when you set out to write a book about HIV in 
Africa is that no one will read it.

When I started writing the book, and certainly when I started 
reporting on this issue in Africa full time, there was a complete 
lack of interested engagement in the North. Over the time. I was 
covering this issue I saw a lot of things change. By the time I was 
finished, the GAP had a clothing line for the issue (HIV/Aids). So 
obviously it was on the radar in the West in a way that it just 
didn't used to be at all.

I don't really know how I would separate out the impact of 28 from 
things like the involvement of Bono or the efforts of Bill and 
Melinda Gates. I think a lot of things happened at once and 28 was 
a part of that.
Once you began reporting on the pandemic in Africa, did you come to 
realize that you had misperceptions about HIV/Aids and if so how 
were they turned around?
I wouldn't say that I had misperceptions that changed particularly. 
I think maybe I [developed] a deeper understanding of how these 
issues are incredibly complicated.
To give you an example, I was writing about migrant labor and the 
role that that's played in transmission of the virus. I was talking 
to some epidemiologists who had been tracking communities of miners 
who come from either rural South Africa or the surrounding 
countries to work in the mines around Johannesburg. The miners are 
here for a couple of years and then they go back home. And I was 
writing about how that quite often those men will have sexual 
partners in the cities where they live - which is not difficult to 
understand if they're away from home for a couple of years - and 
then they take the virus back home with them and infect their 
wives. That's the standard route of transmission that's discussed.

But in talking with these epidemiologists, they said, "Well, 
actually, when we survey miners we find that half of them are in 
couples where one partner is infected and the other isn't and half 
the time it was the women who were infected and not the men." What 
that says, of course, is that when these men went away, their 
female partners, their wives, were also choosing to have other 
partners, again perfectly understandable, [for] people looking for 
companionship, intimacy, sex, possibly financial support, while 
their partner was gone for years at a time.


The discussion around how the virus is transmitted is always about 
men and quite often there's a very loaded discussion of African men 
and their sexuality - which to some degree has its origins in 
behavior that has been extremely damaging. Nobody was talking about 
the fact that there were a lot of women choosing to have partners 
when their husbands were away and what that meant for the 
transmission of the virus. And, of course, until you're honest 
about that and really looking at all the ways the virus is moving 
you're not going to be able to come up with good strategies to 
respond.

That's a very long way of saying that I learned that there's a 
standard way that the African pandemic is discussed and below that 
is a very, very deep layer of nuance that much more often is 
glossed over.

WHAT DID YOU THINK WAS MISSING IN THE LITERATURE THAT PROMPTED YOU 
TO FOCUS ON THE PANDEMIC?

You never heard the human stories. If you got any news outside 
Africa about the Aids pandemic, it was this flat, one-dimensional 
picture of poor suffering Africans. You never heard about the fact 
that virtually everything that had been done to respond to the 
pandemic had been done by Africans, usually by Africans living with 
HIV. And you didn't hear the stories of incredible courage or 
resilience that I was hearing all the time.

You didn't see these people as people and you certainly didn't hear 
about all the ways they were taking on governments and 
pharmaceutical companies and even their own communities, their 
churches, their families to respond to this.
What was the reaction of your editors when you told them that you 
wanted to focus on HIV/Aids in Africa?
Initially it was extremely dubious. They were not enthusiastic at 
all. They couldn't believe that this would be anything but a 
continuation of that one-dimensional, extremely grim story.

WE RECENTLY SPOKE WITH STEPHEN LEWIS [FORMERLY SPECIAL ENVOY FOR 
HIV/AIDS IN AFRICA FOR UNITED NATIONS SECRETARY-GENERAL KOFI ANNAN] 
AND ONE THING HE FEELS STRONGLY ABOUT IS THE U.S. ADMINISTRATION'S 
AIDS PLAN, PEPFAR. HE CONTENDS THAT PEPFAR DOES NOT GO NEARLY FAR 
ENOUGH TO ADDRESS HIV/AIDS AND THAT PEOPLE SHOULD DEMAND MORE 
RATHER THAN CHEERING WHAT THE ADMINISTRATION IS CURRENTLY DOING. 
WHAT IS YOUR PERCEPTION OF PEPFAR?

Well, I think about Pepfar like any other Western donor government 
response to the pandemic:  I would say they don't do enough. But to 
my great surprise I have been extremely impressed with Pepfar.

Everywhere I go in Africa it is the most effective, most efficient 
response to the pandemic that I've seen. They spend money quickly 
and intelligently and they have a huge impact. If you look at the 
numbers they have on treatment, the number of mother-to-child 
transmissions they've prevented, the number of tests they've 
provided, it's been incredibly successful. Obviously it had some 
extremely large problems at the beginning that were the result of 
catering to American political constituencies [rather than] out of 
any real concern for the people of Africa. But most of those have 
been dealt with.
Sure, it would obviously be great if Pepfar were bigger and had 
more money and worked   in more places and that's probably 
Stephen's point. But I think that frankly the Bush administration 
deserves a lot more credit for this than they've received. I would 
say that it's their great American foreign policy triumph and 
virtually nobody in America seems to know about it.

ARE YOU PLANNING A FOLLOW-UP TO 28 AND TO WHAT EXTENT TO YOU KEEP 
IN TOUCH WITH THE PEOPLE PROFILED IN THE BOOK?

I'm not planning a follow-up. For every subsequent edition I update 
the epilogue with the latest news of the people who are in it. I am 
in pretty close touch with all of them. It's really nice to see the 
way the book has had a really positive impact on a lot of their 
lives.

IS THERE ANYTHING ELSE THAT YOU WOULD LIKE TO SAY?

I have seen so many individual acts of great courage and heroism in 
so many different countries. People who are. fighting these fights 
are working with no resources, often when they are ill in isolated 
areas, up against huge forces and nobody writes this down.
There's been almost no recorded history of 25 years of response to 
the pandemic in Africa and almost all of these individual acts of 
heroism have been lost. There are a couple of people like Zackie 
Achmat, whose stories are quite well known internationally, and 
he's a huge inspiration for other Africans.

When the International Aids Conference was held in Toronto in 2006 
I was almost finished writing the book and 13 people profiled were 
at that conference representing their organizations. My publisher 
hosted a dinner, and sitting listening to them talk to each other, 
listening to the Nigerian talk to the Zambian about what they were 
doing about prevention of mother-to-child transmission, and the 
South African talk to the Ethiopian about what was happening in the 
armed forces for HIV prevention, was possibly one of the most 
wonderful moments of the whole process for me.
I thought, this is not an opportunity that these individual 
Africans get. They don't realize that what they're doing is 
actually being repeated all over the continent, that other people 
have exactly the same challenges.

It's important that just a little bit of this get written down 
because by the very nature of HIV you lose so many of the people 
who've been important in these struggles... I did not have that as 
a goal when I started but certainly when I finished I thought that 
I hope the book does a small, small part of that.

Online: http://allafrica.com/stories/200805190274.html?page=2