This is an archive of the Treatment Action Campaign's public documents from
December 1998 until October 2008. I created this website because the TAC's
website appears unmaintained and people were concerned that it
increasingly hard to find important documents.
The menu items have
been slightly edited and a new stylesheet applied to the site. But none of the
documents have been edited, not even for minor errors. The text appears on this
site as obtained from the Internet Archive.
The period covered by
the archive encompassed the campaign for HIV medicines, the civil disobedience
campaigns, the Competition Commission complaints, the 2008 xenophobic violence
and the PMTCT, Khayelitsha health workers and Matthias Rath court cases.
TAC Comments on Anthony Butler Article in Business Day
28 February 2006
Anthony Butler wrote the article below
in Business Day on 27 February 2006. It raised some interesting points. In particular, TAC is also concerned about a lull in the media on HIV in recent months.
However Butler makes a few points which need to be corrected and some which require further comment:
: "This approach has been facilitated by the Treatment Action Campaign’s protracted and selfdefeating refusal to register the substantial element of good sense in the health minister’s claims about poverty, the potential side-effects of AZT, and the importance of healthy living."
It is difficult to enumerate the numerous occasions on which TAC has emphasised the role of poverty, talked in detail about the side-effects of ARVs and written about healthy living. It would be difficult however to find one, just one, scientifically accurate statement by the Minister of Health related to any of these. Despite the Minister's rhetoric (almost entirely inaccurate) about nutrition and AIDS, the government has not brought out a single fact sheet for lay people on nutrition and HIV. A few references to TAC should show that Butler's criticism is unfair:
Side-effects of ARVs
- Talk About ARVs is perhaps our most widely distributed pamphlet. It lists in detail the side-effects of ARVs.
- ARVs in our lives is a TAC booklet on ARVs and discusses side-effects in details
- We have published many articles over the years which talk about ARV side-effects. Click here for an example from Business Day.
- Another example: See our founding affidavit in the current case against Matthias Rath, the Minister etc.
There's much, much more.
TAC's entire discourse has been routed in the role of poverty in exacerbating the spread of HIV, the more difficult problems that poor people with HIV encounter etc. Butler's assertion is simply wrong, as shown by the following:
- TAC actually organised, paid for and led the first large march (of about 3000 people) for a Basic Income Grant. This took place in 2002.
- Most of our work takes place in poor communities. Our members have been extensively educated on social grants.
- Do a search on "poverty HIV" under the search toolbar on our website (tac.org.za) to see the numerous occasions on which we have talked about the role of poverty, frankly far more systematically and scientifically than anyone in government. Here are links to a few of the 155 documents returned by google on our website:
- All see Mark Heywood's Price of Denial.
Again, there's much, much more.
- Talk About Nutrition is TAC's widely distributed nutrition pamphlet, which has been published as an advertisement in many newspapers including the M&G, Daily Sun, various community newspapers, Independent Newspapers etc.
- HIV in our lives is our booklet on living with HIV, which talks extensively about nutrition and healthy living.
- The Business Day piece referenced above deals with nutrition.
- Zackie Achmat, Mark Heywood, Sipho Mthathi, Nathan Geffen and many other TAC spokespeople have talked about nutrition in radio interviews on numerous occasions. Admittedly there have been times where we have reacted defensively, angrily and counter-productively to the Minister's pseudo-scientific comments, but these have been the exception.
Again, there's more.
Again, there's more.
"Presumably government’s approach is intended to accelerate the public opinion cycle to the “post-problem” stage, while providing political cover for the systematic development of the health systems and infrastructure for a wider drug roll-out."
This is unsupported by evidence. There is overwhelming evidence that government's poor response stems from President Mbeki and Minister Tshabalala-Msimang's pseudo-scientific beliefs. Postulating convoluted reasons is counter-productive; Occam's razor applies - Mbeki and Tshabalala-Msimang are AIDS denialists hence the public information campaign is a disaster.
There is very little systematic development of the health system going on. The system is actually degrading. Public health experts are furious at government's lack of vision. There is no proper human resources plan, just a draft framework with empty rhetoric. Although Treasury is pumping more money into health-care, there's no systematic planning to ensure the money is spent properly, a problem that lies squarely with the Minister of Health.
"Government’s public message must negotiate the reality of limited provision and the de-facto rationing of treatments. In such circumstances, any public information campaign would overload existing urban ARV sites and generate an unprecedented wave of community protest."
This is a highly speculative point that Butler provides without evidence. We don't suggest that rolling out ARVs is easy but in communities where it has happened and where this has been coupled with community mobilisation and public information campaigns, there have been tremendous successes, e.g. Khayelitsha and Lusikisiki (admittedly there have been protests too, but these have been peaceful and organised in contrast to the riots over service delivery elsewhere). Also, the burden on ARV sites was preceded by a very fast growing burden on the public health system because of the huge increase in opportunistic infections. Various statistics show this. If government had to encourage people to get tested and to go onto treatment long before their CD4 counts dropped below 200 they would substantially slow the increasing burden of opportunistic infections. The average CD4 count in the public sector according to statistics from the NHLS is about 100, indicating that mostly people who are really ill are accessing ARVs. This is a direct consequence of not having a proper public information campaign.
"The denigration of “western medicine” eases the immediate burden on clinics, but encourages scarce professionals to leave the public sector and undermines public awareness campaigns."
We agree. It also causes death by people not seeking appropriate help. But take a look at queues outside public health clinics across the country at 6am in the morning: there is no easing of burden.
It should be noted though that the recently released HSRC household survey on HIV indicates that less than 1% of the population see traditional healers as their usual source of health-care. Most see the public health system playing this role. It's possible the HSRC question might not be obtaining the real picture, but it does indicate that the role of traditional healers in SA has been overstated.
"Government efforts to contain business panic about AIDS create complacency around workplace prevention and treatment. In all these ways, short-term public quiescence is purchased at the cost of deepening and prolonging the epidemic itself. "
"Animosity towards AIDS sufferers may yet transform into sympathy and political protest once antiretrovirals prove that the virus is no mark of death."
It's worth noting that in areas where treatment is widely available, (e.g. Khayelitsha, Lusikisiki) stigma/animosity is already much reduced.
"Today’s calm about antiretrovirals may represent not the twilight stage of the treatment issue but rather the lull before a political storm."
Butler may be right here, but despite all the anti-ARV rhetoric, the numbers on treatment are picking up.
Finally, if the media is indeed tired of HIV, it's primarily a reflection of the fact that poor people affected by HIV and without ARVs (urban and rural) do not have much say in what goes into the mainstream media. Butler is right in implying that middle-class HIV+ people can easily access treatment and as such HIV becomes less of an issue for them. Surely it is the duty of responsible editors to realise this and continue highlighting the dismal situation for poor people with HIV.
Butler's article in Business Day, 27 February 2006
The road from outrage to apathy
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MORE than 500000 South Africans who need antiretroviral (ARV) drugs are
not receiving them. What then can explain the eerie quiet that has
settled over the battlefield of HIV/AIDS treatment?
In a landmark article — Up and down with ecology, published more than 30
years ago — American policy analyst Anthony Downs argued that even the
most important problems cannot sustain public attention for long. In
fact, he predicted, almost any social issue would pass through the same
five stages, in which outrage ultimately turned to apathy.
At first, an issue interests only experts and bureaucrats working in the
field. Then, after some triggering event, the public makes an “alarmed
discovery” that a problem exists. Newspapers and the airwaves are
suddenly dominated by popular discussion of it. Citizens experience
“euphoric enthusiasm” about the capacity of their society to solve the
problem, and demand action from their political leaders. This is stage two.
The third stage, however, brings a gradual realisation that there is no
“magic bullet”. Recognition of the costs of action steadily grows.
Powerful beneficiaries of the status quo mobilise to oppose change, and
government stalls to avoid budgetary commitments.
Downs’s fourth stage sees public interest slipping away. Citizens cannot
sustain concern about a problem that causes them no personal suffering.
They become discouraged by the complexity and expense of implementation,
and allow the issue to be displaced by another pressing social concern
or by some “good news” story. The cycle culminates in a fifth
“post-problem” stage, a “prolonged limbo” in which there will be only
spasmodic recurrence of interest.
Downs’s analysis helps to illuminate the first stages of the AIDS
treatment controversy. HIV/AIDS did move from expert preoccupation,
through alarmed discovery, to euphoric enthusiasm for antiretrovirals.
Are we moving inevitably towards a “post-problem stage”?
For politicians and bureaucrats, citizens’ cycles of alarm, euphoria,
and disaffection present a major challenge. In a democracy, leaders are
supposed to respond to the voice of the people. According to Downs,
however, it is important to distinguish what government does from how it
portrays its actions. Politicians can usually ignore the peoples’
demands for action, safe in the knowledge that public attention will
drift away. If necessary, a commission of enquiry, empty promises of
action, or a campaign of public disinformation will tide things over
until the excitement dies down. Meanwhile officialdom can continue
quietly to address the “real problem” in its own way.
In the case of HIV/AIDS treatment, the real problem is unusually
intractable. Directing financial resources into a treatment programme
can rapidly bring drugs, equipment and new buildings. But the lesson of
recent international antiretroviral initiatives is that rapidly growing
financial resources can create bottlenecks, drain other clinical
services of personnel, and generate costly new processes and bureaucracies.
The obstacles to sustainable and universal ARV provision in SA are
entrenched and systemic. The number, skills levels, and placement of
health professionals are drastically inadequate to the demands of such a
programme. Counselling and testing capacity still needs to be developed.
Monitoring systems require radical strengthening, supply-chain
management must be revolutionised, and essential education, water, and
power infrastructures still have to be created. The imperative to act is
The political communications challenge, however, is different.
Government knows only a fraction of HIV-positive South Africans
requiring antiretrovirals will receive them. Most of these citizens will
probably die without receiving treatment. However successful the drug
roll-out may be, this politically dangerous gap between need and
provision will remain.
These risks are heightened by government’s tacit rationing policy. SA’s
public-sector employees and skilled private-sector workers increasingly
benefit from medical aid scheme ARVs. Urban citizens are closer to
effective ARV public treatment sites, and educated ones are better able
to secure admission to programmes.
Government’s public message must negotiate the reality of limited
provision and the de-facto rationing of treatments. In such
circumstances, any public information campaign would overload existing
urban ARV sites and generate an unprecedented wave of community protest.
Perhaps it is for this reason that government communications strategy
seems to be to permit — or even to encourage — confusion among the most
vulnerable sections of society around HIV/AIDS science, antiretroviral
toxicity, nutrition, and traditional medicine. This approach has been
facilitated by the Treatment Action Campaign’s protracted and
selfdefeating refusal to register the substantial element of good sense
in the health minister’s claims about poverty, the potential
side-effects of AZT, and the importance of healthy living.
Presumably government’s approach is intended to accelerate the public
opinion cycle to the “post-problem” stage, while providing political
cover for the systematic development of the health systems and
infrastructure for a wider drug roll-out.
It remains unlikely, however, that HIV/AIDS treatment will work its way
through a conventional issue-attention cycle. First, a paradox underlies
government’s efforts to dissociate the “real” problem of HIV/AIDS from
citizens’ perceptions of it. With AIDS, the reality of the problem is
decisively influenced by the public’s beliefs about it. When government
confuses citizens about HIV/AIDS causation, it suppresses demands for
antiretrovirals but at the same time undermines safe-sex messages. The
denigration of “western medicine” eases the immediate burden on clinics,
but encourages scarce professionals to leave the public sector and
undermines public awareness campaigns. Health administrators told that
antiretroviral programmes are nothing special will deny them the
resources they need to succeed. Government efforts to contain business
panic about AIDS create complacency around workplace prevention and
treatment. In all these ways, short-term public quiescence is purchased
at the cost of deepening and prolonging the epidemic itself.
Second, Downs’s analysis is based on his view that human beings cannot
focus for long on the suffering of others. After a burst of alarm and
euphoria, he believes, the privileged and the lucky find the problems of
others a bore. They may even cruelly blame the victims themselves or
point the finger at government.
The political blame game, at least, cannot go on forever. In three
years’ time we may lose both our president and our health minister. When
the systemic obstacles to a universal antiretroviral programme do not
depart with them, who will the armchair critics blame then? Also, wider
public responses to AIDS suffering have been marked by anger and
stigmatisation rather than by the disengagement Downs would predict.
Animosity towards AIDS sufferers may yet transform into sympathy and
political protest once antiretrovirals prove that the virus is no mark
Finally, issue-attention cycles normally unfold where only a relatively
small minority is disadvantaged. The AIDS crisis is still a very long
way from its worst, and the number of citizens needing medication is
going to grow dramatically by 2009. Our ability to deny our obligations
to others is unlikely to survive an epidemic that will touch almost
every family in the society. Today’s calm about antiretrovirals may
represent not the twilight stage of the treatment issue but rather the
lull before a political storm.
‖Butler teaches public policy at UCT.