SAJHIV 1030
REFLECTIONS
Closer to zero:
Reflections on ten years of ART rollout
M Moorhouse, MB BCh, DA (SA)
Corresponding author: M
Moorhouse
(michelle@iydsa.co.za)
Dr Michelle Moorhouse is
the Research and Training Technical Lead for Beyond Zero and
serves on the Board of Directors of the Southern African HIV
Clinicians Society
To reflect upon ten years of
antiretroviral therapy (ART) rollout, one really should set the
clock back a little further to see the massive impact of ART on
our lives – for clinicians and patients alike. My own journey
with HIV began in 1999 when, as a young doctor, I decided to
venture into private practice with a local general practitioner
(GP) while assessing my career prospects. A week into my new
job, the GP went on a trip overseas, leaving me with the
following pearls: ‘look after the HIV patients and don’t let any
die before I get back’. I was terrified, as HIV had not formed
an extensive part of the medical school curriculum when I
trained, and while our exposure to such patients was
considerable, we were taught that the only management options
were palliative.
So I had a baptism of fire,
as the bulk of the practice patient load was HIV, and patients
came from many corners of the Eastern Cape to our practice.
Many GPs in the region at that time did not have the time or
interest to manage these patients and were afraid of
attracting stigma to their practices and driving away other
patients. Mostly I think that they felt helpless and were not
aware of what was happening in HIV medicine outside South
Africa. They didn’t know that effective treatments were
available, and that in the USA and Europe, hospital wards
previously dedicated to caring for dying AIDS patients were
closing down, because patients were living. HIV was becoming a
chronic, manageable disease, and although compared to current
treatments, they were more toxic and less tolerable, people
were living with HIV. And so, when my partner returned from
his trip, all his HIV patients were still alive, and I was
filled with passion to learn more about HIV and treatment
options. But they were the lucky ones, and not too long after
that I lost my first patient to AIDS; unfortunately, the first
of many.
Despite the availability of
effective treatment, accessibility was still very limited at
that time, as was expertise in ART. Antiretrovirals (ARVs)
were expensive (triple ART regimens often costing up to
several thousands of rands each month). Monitoring tests were
expensive. Few medical aids covered HIV treatment, despite the
evidence that even with the high cost of ART at the time,
treating HIV was more cost-effective than the costs associated
with managing opportunistic infections in very sick patients requiring hospital admission.
ART was not available in the public sector, so was only an
option for those few who could afford to buy medications and
pay for the laboratory monitoring tests themselves, or those
who had access to clinical trials.
Despite the medications
that existed, I still had patients being carried in on
mattresses, stretchers, home-made wheelchairs made of garden
chairs on tricycle wheels, and I still had to send many
patients home with what was palliative care at best. One way
of accessing treatment was through my involvement in clinical trials, to bypass
the inadequacies of the prevailing system. I wanted to help as
many patients as we could in this way. Consequently, we were
seeing two ends of the spectrum: the patients enrolled in
clinical trials were flourishing – they were gaining weight,
feeling well and returning to work – while others continued to
die. This dichotomy was very difficult to reconcile in my mind
as a clinician wanting to help all my patients.
More lives were lost due to the
pervasiveness of AIDS denialism at that time. The strong stance
taken by Thabo Mbeki not only prevented access to treatment, but
also resulted in many of those accessing ART through clinical
trials or other means stopping their treatment. The Treatment
Action Campaign (TAC) was fighting battles on many fronts:
demanding access to treatment; campaigning for pharmaceutical
companies to make ARVs affordable; and debunking the myths of
AIDS denialism – and their fortitude and perseverance prevailed.
Finally, in 2004, ART was made available in the public sector.
Fast-forward ten years to 2014.
ART is available; treatment guidelines make provision for
earlier initiation of treatment; the incidence of HIV is slowly
declining; life expectancy has increased; and fewer babies are
infected with HIV. South Africa has the biggest ARV programme in
the world, with more than 2 million people receiving treatment.
Now we have shifted from simply providing some treatment, to
providing treatment that is easier to take in terms of toxicity
as well as convenience. No longer are we merely trying to save
lives – now we aim for quality of life as well as longevity, and
our patients are growing old with us. We are watching them start
families, and helping them to have children who are free of HIV.
Now we are aiming for zero new infections, zero deaths and zero
stigma related to HIV. We are making significant strides towards
achieving what ten years ago seemed impossible.
Yes we now have some great new
drugs, with yet more in the pipeline. And yes, we have managed
to build what is, without any doubt, the largest, most
successful ARV treatment programme in the world. And yes, we
will eventually resolve the logistical issues that result in
stock-outs. And yet there are still patients who are presenting
just as sick as those I was seeing when I first started treating
HIV. They delay testing, or once tested, delay accessing
treatment because they fear they will face discrimination and
stigma. While we have made such great inroads towards zero new
infections and zero deaths, we are not doing as well when it
comes to zero stigma. Until we are able to temper and eliminate
stigma, zero new infections and zero deaths will remain just
beyond our grasp.
S Afr J HIV
Med 2014;15(1):9.
DOI:10.7196/SAJHIVMED.1030