Corresponding author: W D F Venter (fventer@wrhi.ac.za)
Professor Francois Venter
hails from the Wits Reproductive Health and HIV Institute and
Department of Internal Medicine, Faculty of Health Sciences,
University of the Witwatersrand, Johannesburg, South Africa
The state programme giving free antiretrovirals (ARVs) started on 1 April 2004 in several large centres across South Africa. For many of us, it seemed unimaginable, after years of running HIV battles with President Thabo Mbeki and his odious Minister of Health, ‘Manto’ Tshabalala-Msimang, on everything from the cause of HIV to the efficacy of ARVs. A decade later, the state programme is the biggest in the world, with millions of lives saved and families returned back to normal life.
I was involved in the
initial design of the programme, and have since been heavily
involved in the implementation in rural and urban
environments. I like to think about what I’ve learnt about
HIV, and all the things I got wrong. Interestingly, seeing where we
are in 2014, much of what has happened in the last decade was
as unimaginable as the heady days of starting all those sick,
desperate people on ARVs in 2004.
I remember Mark Heywood, the
human rights crusader for Section 27, insisting that we put
‘80% antiretroviral coverage’ when we wrote the 2nd National
Strategic Plan, released at the end of 2006. The fractious
paediatricians also insisted on ambitious prevention of
mother-to-child transmission (PMTCT) targets. At the time,
there were few places with >30% ARV coverage, and reports
of poor antenatal PMTCT coverage were everywhere. I thought that
they were being silly. By 2010, ARV coverage was close to 80%,
and PMTCT transmission rates had fallen below 2%. Even when we
designed the programme, in 2002 in dark rooms in the Birchwood
Hotel, we continually asked whether drugs were affordable.
Before we knew it, we had a pretty good first and second line,
which were refined in 2010. Now we sit with a world-class
fixed-dose combination and third-line drugs not even available
in many developed countries, thanks to the decrease in cost.
The Minister’s crazy rush of blood to the head, where he
wanted to test 20 million South Africans for HIV in one year
in 2010, maybe took a few months longer than he had
anticipated, but it got there – even though I thought it was
impossible – and we’re probably now the most tested nation on
earth.
I come from the typical physician
world of diabetes, hypertension and asthma, where we hug
patients who get >70% adherence. The 90%-plus adherence
demanded by ARVs seemed fanciful, until we tried it. Thanks to
Médecins Sans Frontières (MSF) and the Treatment Action Campaign
(TAC) and their adherence programmes, I’ve realised that
meaningfully involving people in their care and making them
understand their disease and how their drugs work, magically
transforms them into prize adherence patients. I heard Prof.
Steve Reid, a rural advocate, once say that he was amazed at how
HIV patients could describe the lifecycle of the virus and
evolution of resistance, while diabetic and hypertension
patients, when asked what was wrong, would shrug and say: ‘I
have the high-high’.
If it wasn’t for the HIV world
seizing the tuberculosis (TB) research and policy agenda, we’d
still be stuck with the gross lack of ambition that has left
us with third-rate TB drugs and tenth-rate TB diagnostics for
decades, couched in
one of the most offensive and patronising public health
programmes of all – ‘DOTS’ – while staring down the barrel of
a growing multidrug resistance (MDR) nightmare. It staggered
me that my patients in Hillbrow could permanently take ARVs
90% of the time, but the same patients had a <50%
completion rate of six months of TB therapy at the TB clinic
across the road. The story of how they came to the recommended
dose of rifampicin (essentially ‘what dose can we afford’),
and my realisation that, far from what I was taught at med
school, MDR was the fault of the programme (bad doses, poor
support, poor understanding of the epidemiology), speaks
volumes about the kind of history that TB has. It’s become better. I still think
the programme lacks some creativity and certainly resources,
but at least we have a fighting chance, thanks to the
increasing focus by clinicians and activists and their demand
for integrated therapy and better drugs and diagnostics.
Speaking of a lack of ambition, some of
the most dispiriting conversations I have had have been with
conventional public health specialists, saying that we were
diverting resources from their sanitation/food/whatever
programmes, with our ‘non-sustainable’ HIV programmes.
Initially, I was defensive, until I realised how they had
failed our continent on so many levels for decades – whether
health promotion or disease prevention. HIV is common,
serious, preventable and treatable, yet many did not seem to
think it mattered. ARVs alone have increased life expectancy
in South Africa by a decade, in just a few years, making it
one of the most powerful public health interventions ever,
right up there with good sanitation and vaccines. HIV care has
driven energy and creativity into health delivery, and the
focus on an evidence base has, at least somewhat, allowed us
to question some of the holy cows of public health – from the
design of healthcare delivery, the evidence for cancer
screening, to obesity definitions and food
recommendations – and this has meant a new and critical
generation of people who can claim to have public health
expertise. Now we routinely demand attention to evidence
bases, human rights and patient demands from public health
programmes, not always successfully it must be said, but a far
cry from the kind of largely irrelevant public health I grew
up studying.
We sit with a health delivery system largely
designed by European colonisers. They’ve moved on, but we have
clung to a clinic-hospital, nurse-doctor model that was out of
date 50 years ago. It is especially poor in dealing with an
enlightened, google-empowered population asking hard questions
of ill-prepared clinical services. Drug-delivery systems and
training of health professionals seem constantly to be hamstrung
by laws and rules generated by opaque bureaucracies within
structures like the Health Professions Council of South Africa
(HPCSA) and the Nursing Council – where it is very difficult to
see which interest these structures serve. It seems we need
massive re-engineering of the health system that goes well
beyond what even the idealised National Health Insurance (NHI)
looks like.
One of my epiphanies of the last 15
years of working with the Department of Health (DoH) (it’s
true also in academia) is s/he who goes to the most meetings,
wins. This is frustrating, but attention to
process and keeping a beady eye on policy and choices, in an
excitable field like HIV where there are many strident and
powerful voices, is imperative. You can’t rely on minutes and
proxies; you’ve just got to make sure that you get on that
Gautrain to Civicus Building with a fully charged iPad and
lots of coffee.
For a while, we were all big buddies in
the Zuma era. Government embraced activists and clinician
groups. Post Manto, it was a breath of fresh air to be told
how important we were. But we need to be careful – the
defensiveness from prominent DoH members that followed the
release of the drug stock-outs reported in December, including
death threats and thuggish behaviour by security forces
focused on TAC members in the Free State where the stock-outs
were the worst, remind us of how prickly and unaccountable
politicians and civil servants can be. We still do not have
adequate explanation or closure on the bizarre Tara clamp
issue, where a harmful device was used in the circumcision
programmes in KwaZulu-Natal (KZN). Neliswa ‘Peggy’
Nkonyeni, ex-health minister for KZN, instrumental in several
superb KZN healthcare workers losing their jobs when she was
Manto’s quack foot soldier, is making a political comeback,
and there are many people from Mbeki’s cabinet who still seem
to be successful, despite sitting quietly in his
AIDS-denialist circle (c’mon Trevor, what really happened?). At a
provincial level, patient advocates and concerned clinicians
are routinely treated as optional extras or have their jobs
threatened if they rock the boat in local AIDS councils.
‘Protection’ agencies such as the HPCSA continue to let Wouter
Basson earn a handsome living while his victims’ families live
in poverty, while slapping down non-governmental organisations
(NGOs) who support whistle-blowing with spurious
appeals to privacy; the HPCSA and Nursing Council seem to
think that it’s better to let rural people die for want of
healthcare, than license foreigners willing to work in places
desperate for their skills. Civil society needs your money and
your support, for all our future, to take on powerful vested
interests.
The excesses of the Mbeki era have allowed for many of these sectors to coast quietly on World AIDS Day platitudes and occasional HIV testing campaigns. I’m struck at Dr Jan Pienaar’s aggressive no-nonsense HIV programme tackling new infections, stigma and fear at Anglo-American’s Thermal Coal, and at the empty public statements from banks, shopping chains, universities, unions, major churches (in fairness, I’ve seen some amazing courage, especially from some Catholic groups), large NGOs, and opposition political parties. We need tangible commitments to testing and treating people, not the candle-lighting hand-wringing we all dread every 1 December.
I visited a very rural hospital in the Eastern Cape in late December – simply tarring the disastrous dirt road, now promised for years, would make ambulances accessible, health staff happier and prepared to stay, and allow for better support. The staff accommodation is appalling, and the hospital perennially grapples with understaffing. Not a single South African doctor works there. I was angry at how a middle-income country could let its citizens be neglected in this way. But the senior doctor working there spoke approvingly of the new district manager and how he was trying to get things going, about how she had got cooperation from the nurses by improving their living conditions, how the doctors were happier, and how successful the ARV programme was. We picked up a rural woman looking for a lift en route to the hospital, who spoke loudly and confidently about how she loved ‘our hospital’ (it was embarrassing that the doctor, who is from Europe, had to translate for me). A week later, back in civilisation, I bumped into a newly appointed senior member of the DoH who I’ve known and respected for years, who knew all the details of the hospital and the district manager, and rattled off ambitious plans for the next six months, expressing deep dismay at the previous maladministration. There is cause for hope.
We all have a stake in our DoH
being as strong as it can be. There is a lot to be angry and
concerned about, but it can’t stop there. We have to continue to
work constructively and critically, even if we are told we are
not welcome at times. We need the protective institutions to be
challenged, and we need to continue to strengthen civil society,
even if it is just giving them much-needed cash. We need to keep
re-imagining a better healthcare system. And we need to attend
those long meetings.
S Afr J HIV Med 2014;15(1):39-40. DOI:10.7196/SAJHIVMED.1029