[R-G] A victory for South Africa's martyr-in-chief

[shniad at sfu.ca]

Globe and Mail	  September 13, 2003 

A victory for South Africa's martyr-in-chief

In the continental AIDS crisis, Africans have been shocked to find
themselves fighting not just Western drug companies, but one another.
Stephanie Nolen, The Globe's new Africa bureau chief, recounts an AIDS drama
with that rarest of things, a happy ending. But at great cost: Activist
Zackie Achmat nearly lost his life. His old African National Congress
comrade, President Thabo Mbeki, had to sacrifice his pride. Their standoff
lasted nearly five years

By Stephanie Nolen

Johannesburg -- Zackie Achmat hung up his halo last week. Just as well, he
says -- it didn't fit anyway.

"I was never made for a halo," said Mr. Achmat, a gay, communist, atheist
activist and sometime sex worker in South Africa. He gave a rueful little
laugh. He is stepping down as his nation's martyr-in-chief, a post he took
on shortly after Nelson Mandela gave it up. It was damned hard work. In
fact, it almost killed him.

Mr. Achmat is the founder of TAC, the Treatment Action Campaign. It began
five years ago with just him in his living room; today, it is the strongest
social movement in post-apartheid South Africa. And last month, it drove the
government to a stunning reversal in policy. A standoff that gripped the
nation -- the voluble, emotional Mr. Achmat staring down his one-time hero,
the cerebral and dignified president Thabo Mbeki -- ended with Mr. Mbeki's
surrender.

The fight was over drugs, the anti-retrovirals (ARVs) that suppress the
presence of the human immunodeficiency virus, allowing afflicted people to
live healthy lives, sometimes for decades.

On a continent increasingly defined by the menace of AIDS, South Africa has
more infected people than any other nation -- about five million. Six
hundred people die of it in this country every single day.

But fewer than 20,000 South Africans take ARVs, because only people with
private insurance can afford them. Worse still, from 1999 until Mr. Achmat's
recent victory, South Africa's own government steadfastly refused to make
the drugs available in the public-health sector, having been seduced by a
fringe scientific theory that says the drugs don't work.

Mr. Achmat has won the promise of affordable drugs, from both the
pharmaceutical industries and the government. But it was a vicious fight,
and he had to resort to the most extreme of measures: He embarked on the
world's first drug strike, refusing to take the medications (although he
could afford them) until every poor South African had access. His health
collapsed: He had lung infections, fungal infections, a degenerative nerve
disorder, sores that wouldn't heal.

But that wasn't the worst part.

Mr. Achmat, now 41, had been a member of the African National Congress
almost since childhood. He was repeatedly jailed and beaten in the fight
against apartheid. He lived underground, off and on, for the best part of a
decade. Apartheid was defeated, the ANC came to power -- and now he found
himself at war with the government he had spent his life trying to create.

This is a story of two stubborn men. It is also a story that shows that AIDS
in Africa is not only an unrelenting slide into disaster: Something can be
done, although at enormous cost.

This is also a story about how much has changed in South Africa 10 years
after apartheid, and one that echoes far beyond that country's borders as
black leaders struggle to face down the greatest challenge since
colonialism, juggling their dreams of autonomy with their desperate need for
help.

Cape Town was a euphoric place in February, 1990. South Africa's last
apartheid government agreed to negotiate a transition to democracy. Nelson
Mandela walked free after 27 years in prison. The ban on the ANC was lifted.


By rights, Zackie Achmat should have shared the jubilation. The son of
Malay-descended trade unionists, he was, he says, politicized early -- by
his parents' left-wing views, and by his realization that he was gay. He
made a bold entrance into activism at 14 by burning down his school -- he
was frustrated that his fellow "coloured" students were so quick to abandon
boycotts protesting against apartheid, and figured he would remove the
option of going back to school. He went to jail for the first of seven times
and endured his first beatings at the hands of white authorities.

His devout Muslim parents were horrified by his atheism, and he left home at
16, quit school and was recruited by the outlawed ANC. He was frequently
unemployed, and sometimes sold sex for cash in those years.

Then, in 1990, just as his community began to celebrate change in South
Africa, Mr. Achmat received shocking news: During a routine doctor visit, he
learned that he had HIV. He retreated into his house, rented every movie he
had ever wanted to see, and waited. "The doctor gave me six months to live."


But death didn't come. At the end of six months, he felt as well as he ever
had. He turned off the VCR, opened the curtains and returned to activism. He
joined the fight to protect gay rights in the country's new constitution,
and the nascent campaign for people with AIDS. He had good work, being paid
for activism and political research. His health held. For seven years, he
enjoyed the new South Africa.

Finally, in 1998, he got sick: He contracted systemic candidosis, a fungal
infection better known as thrush. He could not eat, and believed he would
die. Then he heard that the antibiotic fluconazole, made by Pfizer Inc.,
easily dispatches most cases of thrush. It cost $20 a day. Mr. Achmat bought
what he could. Friends helped with the rest. Within days, he was healthy
again.

Weeks later, though, his friend Simon Nkoli -- a fellow gay activist -- died
after contracting thrush; he couldn't afford the drugs. Mr. Achmat learned
that the generic version of fluconazole, not sold in South Africa because of
international patent laws, cost just 80 cents a day. At Mr. Nkoli's funeral,
he announced that he would start a campaign to make drugs available to poor
South Africans.

Fewer than 100 South Africans then were open about being HIV-positive:
hundreds of thousands were infected, but the very name of the illness
remained taboo. A woman named Gugu Dlamini had recently been stoned to death
by a mob near Durban after she disclosed her HIV-positive status on the
radio. Mr. Achmat declared publicly that he had HIV. And as he and a few
supporters went after large pharmaceutical companies with their new
campaign, their ranks began to swell.

"We exposed profiteering from medicines in a way that hadn't been done
before, at a time when so few people were on the medicines," Mr. Achmat
recalled recently over coffee, in a café near TAC's bustling Johannesburg
office. He speaks so quickly he almost cannot get the words out. "And we
struck such a chord that even whites said, 'Good for you guys.' "

At the outset, TAC's goal was to force the international drug companies to
lower the prices of medicines to treat opportunistic infections such as
thrush and tuberculosis (the leading cause of death for HIV-positive people
in South Africa), and of the anti-retrovirals such as AZT. The drugs cost
$900 a month in a country where the average income was only $300 monthly.

Treatment is vital, of course, to keep people alive: South Africa can little
afford to lose 600 people each day. There are already 850,000 children
orphaned by the disease, and the country is fast losing the doctors,
teachers and administrators it needs to deal with the crisis.

But ARVs also serve a crucial purpose in fighting the epidemic's spread.
When there is no treatment, Mr. Achmat explained, an HIV-positive diagnosis
is a death sentence. People will not get tested, and will not disclose their
status -- publicly, or to sex partners. But when ARVs are available,
repeated studies have shown, many more people are willing to be tested, and
to make changes in their sexual behaviour. "You can't check the epidemic if
you don't treat the disease," he said. "People won't come forward if there
is nothing to be done."

TAC started with babies. What company could withstand charges of
profiteering on dying babies? By 1999, about 40,000 children were being born
infected with HIV in South Africa each year, because their mothers could not
afford the $75 for a short course of AZT, which would lower the risk by at
least half. TAC intended to shame GlaxoSmithKline Inc., which makes AZT,
into lowering the price. They started with demonstrations and marches to
company headquarters, where an impassioned Mr. Achmat bellowed about
corporate greed into a megaphone.

The campaign initially had government support: "If you want to fight for
affordable treatment, then I will be with you all the way," said Dlamini
Zuma, then the health minister. While Mr. Mandela almost never discussed
AIDS when he was in office -- insisting that an elder from his culture did
not publicly talk about sexual matters -- his deputy, Thabo Mbeki, had shown
an intense interest, and spoke of the need to mobilize resources to fight
it.

The Medicines Act was rewritten, allowing South Africa to override drug
patents and provide generics. TAC was jubilant, since clearly there could be
no public-sector drug-treatment program if the government had to buy drugs
at list price. But the Clinton administration in the United States, heavily
lobbied by the pharmaceutical industry, threatened sanctions if South Africa
went ahead with the production of generics. The plan was suspended. TAC
campaigned intensely for a year -- even sending sympathetic Americans to
protest on Al Gore's campaign trail -- until the threat was withdrawn.

Mr. Achmat, meanwhile, went on his drug strike. "I will not take expensive
treatment until all ordinary South Africans can get it on the public-health
system," he announced in December, 1998. "That probably means I will die a
horrible death, even though medical science has made it unnecessary."

It was, he recalled later, a terribly difficult decision personally, but the
only choice when it came to his political conscience. "It's wrong to be able
to buy life."

The pharmaceuticals began to sense a public-relations disaster, and
expressed a willingness to negotiate on providing lower-cost medicines.

And then something went hideously wrong. Mr. Achmat grimaced with pain at
the memory: "Then the government went mad."

Mr. Mbeki, South Africa's current President, lives in the shadow of his
predecessor, Mr. Mandela. But he is by all accounts a brilliant man:
British-educated, a veteran of the ANC struggle, and a fierce advocate of
the idea that Africans must solve Africa's problems. He is a darling of U.S.
President George W. Bush and other Group of Eight leaders, because he is a
vocal proponent for good governance in Africa, of the need for less foreign
aid and more trade and investment.

His government has fared moderately well at efforts of regional policing,
and moderately well in meeting the mammoth needs of a South Africa still
crippled by the legacy of apartheid. But on the issue of HIV/AIDS --
arguably the most important in South Africa today -- Mr. Mbeki has few fans
at all.

"On the 20th of October, 1999, the President gave a speech in which he said
AZT was toxic," said Edwin Cameron, the shock of it still fresh. "This
signalled the start of an apparent courting of the AIDS denialists."

Mr. Cameron is a judge on South Africa's Supreme Court of Appeals, appointed
by Mr. Mbeki. In April, 1999, he became the first public official in South
Africa to disclose that he was HIV-positive. Four-and-a-half years later, he
remains the only person in public office living openly with the condition.

Mr. Cameron was diagnosed in 1986, two years before AZT went into drug
trials. He believed it was a sentence to a slow, inevitable death. Then came
ARVs. In 1997, when he first fell ill with AIDS, he used one-third of his
salary (an immense sum, by South African standards) to buy ARVs. 

"I was given my life back. I realized within two weeks of starting on the
ARVs -- God, I got my energy back and I suddenly realized the virus had
stopped working in my body, it was waking up from a nine-year decline. I had
PCP in both lungs, I had systemic thrush throughout my body, I had no
appetite. I had lost 10 per cent of my body weight. And suddenly I was
voraciously hungry. It was so joyful."

But Mr. Mbeki branded those same drugs toxic. 

"Of course the drugs are toxic," said Mr. Cameron, almost trembling with
exasperation. TAC recently lost three prominent activists whose bodies could
not withstand the drugs. But there is no question among credible scientists,
he said, that ARVs are the only thing that keep most people with AIDS alive.


Mr. Mbeki, however, was exploring ideas that originated among a small pocket
of academics and scientists in the United States in the late 1980s. They
call themselves "HIV dissidents," and in forums such as virusmyth.net, they
question whether HIV causes AIDS, whether the virus is in fact transmitted
through sex, and whether AIDS patients are poisoned by AZT or other
anti-retrovirals.

AIDS activists looked on in horror as Mr. Mbeki invited scientists whose
research was widely and violently disputed in the West to sit on his
advisory panel on AIDS. When the international conference on HIV/AIDS came
to South Africa in 2000, he spoke to the audience of thousands about AIDS as
a "lifestyle" disease, one of malnutrition and poverty. ARVs, he claimed, do
not help and frequently make patients more sick.

A short time later, he said AIDS was being promoted by drug companies; the
activists wanted his administration to "sacrifice all intellectual integrity
to act as salespersons of the product of one pharmaceutical company."

Mr. Mbeki's statements on HIV and the drugs contradicted the positions of
everyone from the World Health Organization to South Africa's own Medicines
Control Council. At home and abroad, there was total bewilderment at his
position: What could Africa's foremost statesman possibly be thinking?

Mr. Mbeki refuses to do media interviews on this subject. Part of his
suspicion no doubt lies in his experience in the fight against apartheid,
when the white government sponsored medical research into biological weapons
that would target the black population. From that perspective -- when
science fiction was real life -- it wasn't too much of a stretch to think
that drug companies would misrepresent AIDS.

Those who know the President say his position on HIV is born of an immense
frustration. "I think this whole HIV-dissident thing comes from an emotional
place," mused a Western diplomat who has worked with him through three
decades. "From an unwillingness to believe that just at the moment when they
have won everything they fought for, for so long, paid so dearly for, that
suddenly it would all be taken away -- that there would be no new South
Africa, that the country is going to be wiped out and there is almost
nothing he could do about it.

"He grasped at a position that said, 'Maybe it doesn't have to be that way.'
"

A prominent ANC activist who knows the President well said the issue is
complicated by one of Mr. Mbeki's great obsessions, Western
characterizations of blackness and black sexuality. "He believes it is
racist to suggest that AIDS originated in Africa, and that the focus on the
virus being transmitted by sex is all part of Western ideas about black
sexual behaviour," the man said.

In a lecture at the University of Fort Hare in 2001, Mr. Mbeki said: "And
thus does it happen that others who consider themselves to be our leaders
take to the streets carrying their placards. . . . Convinced that we are but
natural-born, promiscuous carriers of germs, unique in the world, they
proclaim that our continent is doomed to an inevitable mortal end because of
our unconquerable devotion to the sin of lust."

Such criticisms of AIDS orthodoxy have won Mr. Mbeki some sympathy among the
black elite. Certainly his current Health Minister, Manto
Tshabalala-Msimang, embraced his line. She mocked Mr. Achmat at public
meetings, said she could not in good conscience "poison" a pregnant woman
with AZT, and insisted there would be no natal-transmission program in South
Africa. Infamously, she announced that people with HIV should preserve their
health not with drugs, but with a diet of garlic, lemon, olive oil and
African potatoes.

Now, TAC had a new fight on its hands. Mr. Mbeki and his supporters would
prove to be adversaries as obdurate as any Mr. Achmat had ever taken on.

"It's like your parents withholding medicine from you when you're a kid," he
said. "We never expected to fight the government. We expected maybe a bit of
resistance by the state over resources, but we were quite prepared to extort
money from rich countries on behalf of the government. . . . I mean, the
love we have for them . . ."

But TAC put that love aside. 

In late 2000, Mr. Achmat flew to Thailand, bought 5,000 fluconazole pills,
for 28 cents each, and publicly carried them into South Africa. The
government had him arrested on smuggling charges.

Meanwhile, TAC's pressure on the drug companies was beginning to show
results. Pfizer agreed to provide its drug free in public clinics, and other
drug companies began to take similar steps, offering discounts of up to 90
per cent off their initial prices. By the summer of 2001, Boehringer
Ingleheim Inc. was offering Nevirapine free to pregnant South African women.


The government refused to accept the drug. TAC formed a coalition of
community groups and took the government to the constitutional court in
August, 2001. Less than a year later, South Africa's highest legal body
stunned the government by ruling it had to provide the drug to pregnant
women.

Even then, it stalled, claiming most hospitals lacked the infrastructure to
administer it. Only last October did Nevirapine finally become available in
a handful of large urban hospitals.

In early 2002, the provincial health authority in KwaZulu-Natal was awarded
$101-million by the Global Fund to Fight AIDS, TB and Malaria, to pay for an
ARV program. Ms. Tshabalala-Msimang refused to allow the region to have the
money. 

The fight was starting to divide ANC supporters. The unions, a traditional
bastion of party support, took TAC's side. A handful of high-profile
politicians defected too. (In one of the darker ironies of this story, it is
an open secret that there are more than a few HIV-positive members of
Parliament whose "toxic" ARVs are paid for by their government health
plans.) 

As he continued his drug strike, Mr. Achmat's celebrity grew. At home, his
was a constant voice of articulate criticism; abroad, he was recognized for
the courage of his convictions -- and as a back-handed way of expressing
disapproval of the Mbeki government. He was the guest of honour to the Elton
John AIDS Foundation annual ball; he was TIME Europe's "Man of the Year;" he
won the prestigious Jonathan Mann Award for Global Health and Human Rights
from the Global Health Council in Washington.

And then TAC won the support of the most influential man in South Africa. In
July 2002, Nelson Mandela went to visit a then-very ill Mr. Achmat at his
home in Cape Town, and toured a clinic where Médecins sans frontières has
400 people on ARVs (with a compliance rate for following the pill regime
that exceeds that of most AIDS clinics in North America). Mr. Mandela
embraced Mr. Achmat, and in one of the seminal moments in the fight against
AIDS in his country, with the cameras rolling, he put on one of the
"HIV-positive" T-shirts that have become TAC's symbol.

The government was unmoved. And the fight got nastier. In March, TAC
launched a campaign of civil disobedience, occupying police stations across
the country and demanding that Ms. Tshabalala-Msimang and Trade Minister
Alec Erwin be arrested for culpable homicide. Crowds of 600 -- a day's worth
of deaths -- occupied offices and ministries. It was a huge protest, with
broad public support. 

The ANC was enraged. "The ANC deliberately spread the idea that you cannot
do civil disobedience against a legitimate government -- that civil
disobedience is what we did to get rid of apartheid," Mr. Achmat said,
shaking his head.

All the while, the virus had been wreaking slow, steady havoc in Mr.
Achmat's body. "Did I ever think it would be this long?" His expressive face
twisted in disbelief. "Never. Never."

The longer the strike went on, the sicker he got -- and the more of a hero
he became for poor South Africans.

Rose Thame runs a support organization for HIV-positive survivors of rape
out of an old shipping container in the vast squatter settlement of Orange
Farm outside Johannesburg. It is home to an estimated 100,000 people, at
least a third of whom have HIV/AIDS.

Ms. Thame, 51, has been raped three times in her township neighbourhood, and
has lived with HIV for a decade. She reveres Mr. Achmat. "From Zackie I've
learned to be a leader," she said. Four years ago, she was gaunt, sickly,
refusing to see friends or family -- and then she joined TAC. "Zackie is my
role model."

And yet, much as she admires his moral courage, she worried about him. "When
you are a leader of people, you have to be strong. It's not okay for Zackie
not to take the drugs -- he cannot die. If he dies, those who won't release
the drugs will be responsible."

Mr. Achmat's friends watched his declining health in frustration. "I never
supported the drug strike," Mr. Cameron said in July. "There's no point in
his dying. . . . His death would serve an instrumental purpose in
highlighting the lack of access to drugs -- but that would be totally
outweighed by the loss of leadership."

Even Mr. Mandela urged Mr. Achmat to end the strike.

Mr. Achmat wanted desperately to take the drugs. He was sure they would
restore his health; he wanted to be well enough to earn a law degree he had
begun at Cape Town University, with the eventual goal of being a High Court
judge -- the TAC fight having filled him with enthusiasm for the powers of
the constitution. He wanted to write a novel, and to see more movies.

But how could he back down, when people like Ms. Thame still couldn't get
the drugs? "I meet these women who say, 'I hang on because I know you're not
taking your medicines,' " he said in July. "There is guilt now. If I decide
to take them, I need to explain myself to those people. Not to the media, or
to Thabo Mbeki.

"I don't want to kill myself for Thabo Mbeki. I can't think of a dumber
thing to do."

In the end, he was given an order he could not refuse: TAC held its national
congress in Durban in early August. The agenda was heavy with serious
matters -- the civil disobedience, the progress of a national
treatment-literacy campaign.

But at the start of the meeting, treasurer Mark Heywood stood up on the dais
beside Mr. Achmat and the other members of the executive, and made a motion.
"TAC is about ensuring people live," he said to a sea of people in
"HIV-positive" T-shirts. "Zackie must take his medicines."

Speakers rose to address the motion: "Any life we can save by whatever
means, we must," one said. "You must take them, Zackie, because we need you
to be around to fight," another said.

It went to a vote, and the decision was unanimous: Zackie Achmat's own
organization ordered him to end the world's first drug strike.

A few days later, on Aug. 4, Mr. Achmat marched with thousands of other TAC
members to the site of South Africa's first-ever national AIDS conference.
Many of the key members of government were inside. Mr. Achmat faced the
crowd. "I decided to take my medicines," he said. The response was a
deafening roar. "I am not going to die, because they want us to die." The
crowd broke into songs and dancing. 

"It had been difficult to resist the entreaties of my sister, my
ex-boyfriend Jack, my current boyfriend," Mr. Achmat recalled a few weeks
later. "But this was an entreaty from a crowd of people who had a vested
interest -- they really need the medicines."

His partner, friends and family were delighted, and others say there will be
additional advantages to such a high-profile person taking the "poisonous"
medicine. "It is high time that South Africans see that these drugs are
lifesavers," said Dr. Kgosi Letlape, chairman of South Africa's Medical
Association.

But in the media, his decision was characterized as the end of "an
unsuccessful effort to force the government to give its people the
medicine."

Then, four days later, it happened: South Africa's cabinet, in a stunning
reversal, announced that it would begin steps to make ARVs available in
public clinics. The statement promised an operational plan by the end of
September, and reaffirmed the science of HIV/AIDS pathogenesis and
treatment.

Conditions in South Africa had changed dramatically in the five years of the
strike -- drugs that cost $900 a month were now between $120 and $240,
within the reach of many thousands more people (although far, of course,
from all South Africans). The announcement noted "new developments
pertaining to prices of drugs, the growing body of knowledge on this issue,
wide appreciation of the role of nutrition, and availability of budgetary
resources" that allowed government to make an "enhanced response" to AIDS.

The announcement was greeted with international acclaim. Mr. Mandela
pronounced himself "overjoyed." Foreign leaders sent congratulations,
suggesting South Africa's leadership could change the approach to treating
AIDS across the continent.

Mr. Mbeki and his government, of course, made no mention of TAC's role in
their decision, and have not invited anyone from the organization to be part
of the organizational team for the drug roll-out, although TAC arguably has
as much expertise on the use of ARVs as any other body in the country. Nor,
more ominously, has the government committed to a schedule for having the
drugs in clinics, prompting speculation in the South African media that this
is a "publicity stunt" that will be followed by more "foot-dragging."

Mr. Mbeki did not comment publicly on his change of heart; indeed, it has
been months since he spoke publicly about HIV/AIDS. When a top-level U.S.
delegation headed by Senate Majority Leader Bill Frist came to South Africa
in late August to discuss HIV, the President was unavailable to meet with
them. His substitute, Mr. Erwin, insisted that the epidemic was being
"well-managed" by the ANC government.

Mr. Achmat, meanwhile, proceeded to the necessary tests -- his CD4
lymphocyte count, a measure of the immune system, was 203. (In Canada, a
patient normally begins ARV treatment when the count sinks below 350.) This
week, he began taking Triomune, a generic compound of medications, imported
from India at $53 a month.

His doctors tell him that the strike has probably not done permanent damage
to his health; his regret is the five years of exhaustion and constant ill
health that could have been averted with the drugs.

"It was one of those things that had to be done," Mr. Achmat said. "I did it
for my conscience, first of all. And secondly, it helped create public
understanding of the issue. It was very important to get people to realize
what the government was up to -- not only TAC people or AIDS activists or
people directly affected by the epidemic. Many people got an understanding
of drug pricing and of government neglect."

He does regret not hitting the government harder, sooner, perhaps with civil
disobedience that resulted in mass jailings. "The tragedy for me is that we
put our party loyalty ahead of people's lives."

Mr. Achmat has become the face of the fight for drugs in South Africa -- a
media darling, a bit of a diva. Still, for some months, he has tried to
shift the spotlight on to other TAC members; he hopes that with a
public-sector rollout coming, that will happen and he can move on to law
school. "Now, I don't have to be a hero or a saint or any of those things.
I'm pretty glad the halo's gone."

He laughed again, a little darkly. "Now I just hope the medicines work."