"What mattered to me as person living with HIV was to be told that HIV
did not cause AIDS. That was nice. Of course, it was like printing
money when the economy is not doing well. Or pissing in your pants
when the weather is too cold. Comforting for a while but disastrous in
the long run."

http://oraclesyndicate.twoday.net/stories/3730077/

Winstone Zulu regrets flirting with HIV/AIDS denialism

Dr Mannasseh Phiri - Winstone Zulu is probably the foremost and most
well known HIV and AIDS activist from among all Zambian people living
with HIV and AIDS. He has traveled far and wide and has rubbed
shoulders with the high and mighty - with famous scientists,
presidents, prime ministers and non-political leaders. He has shared
the stage with Nelson Mandela at conferences in his work with HIV,
AIDS and TB; and has recently had an audience with the current Prime
Minister of Japan.

We salute you again, Winstone Zulu.

In the predecessor to this column in The Post, Winstone wrote a weekly
column in which he sometimes shared with his readers the agony and
anguish of having HIV and suffering some of the pain of opportunistic
infections and AIDS defining illnesses. It was a deeply personal
column, written from the bottom of his heart, in which he campaigned
for the rolling out of antiretroviral treatment and fairer treatment
of HIV positive people in general.

A few weeks ago, I met and chatted for a few minutes with Winstone
Zulu in a car park and he told me that he had written something to
this column, in response to the article that I had written discussing
AIDS denialism ("Many Forms of HIV Denialism" - Sunday Post March 11th
2007). The article defined and described the several forms and levels
of HIV and AIDS denialism - starting with denial that HIV, the virus,
causes AIDS, the syndrome of diseases. It stated how denialism
negatively affects the fight against HIV and AIDS.

It also described other forms of denialism - such as the conspiracy
theories that suggest more sinister origins of the virus - like the
one that advance the notions that the virus was deliberately created
in a laboratory by one race for the sole purpose of annihilating the
black race from the face of the earth.

In that article, I had listed Winstone Zulu as one of the famous HIV
denialists, and said about him:

"The first Zambian to go public about his HIV positive status, our own
Winstone Zulu, was one of the panelists (on the international advisory
panel of prominent scientists and personalities convened by President
Mbeki). He is on record as having come away from meetings of the panel
convinced that HIV does not cause AIDS. He was filmed saying as much
and appears in a DVD and video circulated by the dissidents, saying
that he believed HIV did not cause AIDS.

According to the book AIDS Africa - Continent in crisis by Zimbabwean
author and AIDS activist Helen Jackson (published by SafAIDS 2002),
Winstone Zulu circulated a press release during the Durban Conference
to the effect that he did not believe HIV causes AIDS. Apparently, he
denied that "even one person has died of AIDS in Zambia". Winstone
Zulu, the then outspoken proponent of rights for people infected with
HIV, had joined the bandwagon of denialism".

Last week, I received an email from Winstone Zulu, in which he
discusses frankly and openly about the events surrounding that period
when he became a denialist. I shall reproduce the letter in full, so
that Winstone's side of the story is told once again. He wrote:

"Dear Dr Phiri,

I wish to thank you for your column that I have always followed since
its inception. It is a very useful piece that provokes health debate
and reflection about AIDS. Until now I have not contributed to this
column save for calling you on phone when The Post quoted Dr Mwaba of
the Zambia Medical Association who was alleged to have said that
people living with HIV should not be allowed to stand for presidency
as they would eventually develop dementia and become "Chainamic".

You clarified that the quote was taken out of context. I was glad to
hear that you did not support that view. I think people generally go
to Plot One in a sane state but get confused with how to use all that
power while there. Even if you put someone as sober as General
Miyanda, chances are that it wouldn't be long before he becomes
"Chainamic". And this is the last time that I am using the word
"Chainamic" as I feel it is a derogatory word for those that use
mental health services.

Meantime, allow me to contribute to your column of March 11, 2007, in
which you discussed the issue of denialism. As usual the piece is well
written and captures the main points of AIDS denialism. But I would
like to point out that although I had doubts that HIV causes AIDS in
the period between 1998 and 2001, I do not entertain those ideas any
more. In fact, just a year after being on President Thabo Mbeki's
panel, I wrote to him personally giving my reasons why I felt
following the dissidents' discourse was inaccurate. I mentioned that I
was unwell from fungal infection and was terribly fatigued and that I
couldn't walk anymore.

I also mentioned that his belief that AIDS was caused by poverty could
not be true as there is almost a predictable age group that is
attacked by AIDS. I pointed out that while over a thousand teachers
were dying every year in Zambia very few of their pupils between the
ages of seven and fifteen, who were often in worse economic
situations, were succumbing to illness and death. Mr Mbeki replied to
my letter expressing sorrow that I wasn't feeling well. He suggested I
should see medical doctors to treat the specific problems that I had.
Although the word "AIDS" was mentioned in his reply, HIV was not. It
was very clear to me that my letter and health situation did not
convince him that behind my fatigue and fungal infection lay another
problem.

Frustrated with his response, I made public our correspondence and
sent our letters to the Star Newspaper of South Africa who published
them. Later on I did a phone interview with Positive Nation, UK's
foremost magazine for people living with HIV or AIDS. In an article
called "Denial, Despair and Defiance" I talked about why I found the
arguments of the dissidents appealing to me as someone living with
HIV. I also narrated why this did not help me in the long run, etc.
Since then I have talked freely to thousands of people about that
episode in my HIV-positive life and shown regret that I may have done
harm to people who look to me for inspiration.

Afterwards, I also wrote a weekly question-answer column in The Post
in which I campaigned for the roll-out of anti-retroviral therapy
(ART) countrywide.

I would be grateful if you mentioned, in one of your future write-ups,
what I have written above and if any of your readers are interested in
finding out why I got hooked to dissident ideas and later changed my
views, I will be most willing to share my story with them.

I wish to end by quoting your conclusion of that article, "The thing
to do is not to immediately believe and act on everything one reads or
hears, no matter the source. Always check and check again with those
in the know".

That in fact was where I somehow went wrong.

Amongst those that said HIV does not cause AIDS was Kalli Mullis, the
man who invented polymerase chain re-action - one of the technologies
used to measure viral load. He went on to win the Nobel Prize for
that.

Perhaps the most well known dissident is Peter Duesberg, who until he
espoused his dissident views was considered one of the top scientists
in the USA. He, among other things, discovered oncogenes thought to be
the cause of some cancers. He was a member of the American Academy of
Scientists and used to receive thousands of dollars from the
government for his research. Last but not least there is David Rasnick
who is a recognized expert on protease inhibiters. There were also a
number of others with impressive scientific and medical backgrounds
who somehow felt the science did not add up. In other words, for me it
was very hard to tell who was really in the know. What mattered to me
as person living with HIV was to be told that HIV did not cause AIDS.
That was nice. Of course, it was like printing money when the economy
is not doing well. Or pissing in your pants when the weather is too
cold. Comforting for a while but disastrous in the long run.

Finally, does HIV cause AIDS? Of course. Although there is no single
scientific paper that proves HIV causes AIDS there are tens of
thousands of papers containing a wide range of evidence that, taken
together, make the case overwhelming. Apart from that, the way ARVs
has changed the AIDS landscape is another proof that orthodoxy theory
is accurate. Days ago I met Harriet Mulenga. The last time I saw her
four years ago, she was just starting to take her ARVs. She looked
like a walking skeleton. Now when I said how are you, she stood up and
showed me her well-rounded healthy body. I couldn't help but simply
said "Mwalila ama ARVs? She is simply a clear case of the 'Lazarous
effect'.

To quote the AIDS organization AVERT, "People should be encouraged to
question scientific orthodoxy. However, the views of AIDS dissidents,
which have been well known for many years and thoroughly debated in
scientific journals, have failed to win support. The core arguments of
the Perth Group (that HIV has not been isolated according to their own
particular rules) and Dr Duesberg (that no one fully understands how
HIV causes AIDS) do not invalidate the wide range of evidence outlined
on those papers. The HIV theory is compelling because it provides a
simple, unique cause that consistently accounts for all of the
observed phenomena".

Winstone Zulu - PALS Global Health Campaign"

I know many people who had nothing but admiration for Winstone Zulu's
courage in coming out about his HIV status when he did, so early in
the HIV and AIDS pandemics. He came out at a time when very little was
known about AIDS except that it killed and that it was transmitted
through sexual intercourse. People with HIV and AIDS were stigmatized
into haplessness and hopelessness, because in those days being HIV
infected meant that one had been promiscuous and sinful. At that time
there was no antiretroviral treatment available. Yet Winstone came out
strongly and positively, championing the right to life and respect for
the people living with HIV and AIDS.

Thus when he came up on the side of international HIV and AIDS
dissidents, those who had admired him were disappointed and some even
confused. Here was a leader and champion for people living with HIV
and AIDS - making statements and appearing in a video that said that
he did not believe that HIV causes AIDS. It sent confusing messages to
all. Not just to the people that he led in the organisation "Positive
And Living Squad" or PALS.

Winstone had already ruffled Zambian feathers before that, more than
once. First when he announced that he was getting married. Many
Zambians thought and said that he should not get married because he
has HIV. He stuck to his guns bravely and got married. And then he
ruffled even more feathers when he announced that his wife had a baby.
Many thought he should not be having children, knowing that there was
a chance they might be born infected with HIV.

It takes a very bold human being to come out and tell the public that
he is infected with HIV, and then to announce that he is getting
married. We saluted Winstone Zulu when he did that, but many of us
withdrew our salute when he became a dissident.

But we saluted him again when he saw sense and denounced the
denialists, including President Thabo Mbeki. And we salute him again
now, as he regrets having misled people in his flirtation with AIDS
dissidents and their denialism.

For it takes an even bolder man to admit publicly that he was wrong,
and to apologise for misleading those many people who look up to him
for inspiration.

We salute you again, Winstone Zulu.