REFLECTIONS
The Hannan Crusaid Treatment Centre – early beginnings and lessons learnt
Corresponding authors:
L-G Bekker
(linda-gail.bekker@hiv-research.org.za) and R Wood
(robin.wood@hiv-research.org.za)
Richard
Kaplan, Catherine Orrell, Stephen Lawn, Linda-Gail Bekker and
Robin Wood hail from the Desmond Tutu HIV Centre, Institute of
Infectious Disease and Molecular Medicine, Department of
Medicine, University of Cape Town, South Africa
After 12 years, the Hannan Crusaid Treatment
Centre (HCTC) in Gugulethu, Cape Town has screened more than
10 000 women, men, adolescents and children for life-saving
antiretroviral therapy (ART). While we have seen a slow but
steady increase in the starting CD4+ count
of new patients, the monthly inflow of new
clients goes on unabated. A successful example of
public-private partnership, this provincial clinic, supported
by a local non-governmental organisation and initially funded
by a UK-based charity, may provide a model for similar
programmes within the National Health Insurance plan. Here we
discuss the history and development of this programme, with a
focus on lessons learnt about rolling out ART in South Africa
more generally.
Early beginnings
The first community-based treatment at the Gugulethu Day Hospital was provided in 2002 by a team from the Desmond Tutu HIV Centre, literally working out of a biscuit box! Dr Catherine Orrell, Sr Felicity Cope and six counsellors opened a clinic on three days a week, bringing in their daily supplies each time in a cardboard box and having to wait for the availability of a consultation room. The first patients were extremely ill and many did not survive the first few months of ART. Shortages of medication meant that rationing decisions had to be made on a daily basis. Despite this, the team continued with enthusiasm, as every patient was known by name, many received regular home visits, and some were at times escorted to hospitals by our doctors or had ART hand-delivered to them while in hospice care.
By March
2003, the ART service was able to open full-time with the
addition of Dr Kwezi Matoti (and his room in the clinic,
giving a dedicated space for the service), with Sr Lulu Mtwisha heading
Sizophila, a team of therapeutic
counsellors who provided support for patients starting
treatment. The first 150 carefully rationed treatment places
were expanded to just 350, but we endeavoured to have an
open-door policy – allowing people to attend whenever they
felt they needed,
and never turning anyone away. While the initial focus of the
treatment programme was predominantly on the provision of ART
in a primary healthcare setting, over time we also established
a strong research programme that enabled us to better
understand the HIV epidemic and the impact of our
interventions. Much of this work has gone on to inform local,
national and international policies and, as elsewhere in South
Africa, this demonstrates
the potential synergies that academic medicine can bring to
strengthening healthcare delivery. This has included insights
into ART adherence, nurse-driven services to step-down ART
management, earlier treatment of HIV/tuberculosis (TB)
co-infection and rapid initiation of ART in pregnancy. Of
note, the HCTC team helped to shape the first Western Province
ART guidelines using the lessons learnt from this clinic, and these subsequently went on
to inform the first national ART guidelines.
In 2001, the size of the problem made it very clear that ART
would need to be delivered at primary healthcare level and
money was sought to provide such a programme in the Nyanga
District of Cape Town. So began a three-way partnership
between the Western Cape Provincial Department of
Health, led by
Dr Fareed Abdullah, the Desmond Tutu HIV Foundation and
CRUSAID, the UK-based AIDS Charity with a large endowment from
Ms Katy Hannan.
Lessons learnt
Adherence, loss to follow-up and virological failure
A strong interest in adherence led us to design our programme
to include three treatment-preparedness sessions and to include
pill counts at each visit. Early adherence data were excellent
and virological suppression (viral load (VL) <50 copies/ml)
was noted in >90% of those receiving treatment at every time
point in the first 3 years.1 A system, initially called
the ‘red alert’ system, was designed to identify and support
those whose VL was unsuppressed (>1 000 copies/
ml) at any point after starting ART. This ‘red alert’
system included an extra adherence-focused education session, an
increased frequency of counsellor home visits, the provision of
pill boxes and monthly visits to the clinic. We showed that 75%
of those who experienced virological breakthrough could
re-suppress their VL after this intervention.2 Based on
counting tablet returns, adherence appears to remain high in the
cohort. Adherence continues to be an important focus of the
programme and, with the introduction of TB treatment in the
clinic in 2011, the adherence support system was expanded to
provide integrated community support for HIV/TB co-infected
patients.
Sizophila (‘we are well’) therapeutic counsellors
In 1999, a small band of enthusiastic women who had survived
HIV as participants in our early ART clinical trials stepped
forward requesting to help others do the same. We taught them
all we knew about ART, called them ‘therapeutic counsellors’ and
initially asked them to work in our programmes at Somerset and
Groote Schuur hospitals in Cape Town. These counsellors were the
earliest accompanateurs or patient advocates and the forerunners
of the community care workers we have in our primary health
programme today. Elaine Dube, one of the earliest and as
passionate today, went on to become involved in the very
successful antenatal care Mothers2mothers programme. Initially
we started with a ratio of one therapeutic counsellor to every
ten patients. Community-based, they worked in the
areas where they lived, knew their ‘assigned’ patients
personally, and were highly effective for many reasons: two
important ones being their deep understanding of their condition
and the impact of ART in their own lives, and the intense
empathy that they offered, living openly with their own
infection at a time when HIV was highly stigmatised. Today they
remain the cornerstone of the success of the clinic and it is
well accepted that any community-based ART programme requires
community-based support.
HIV/TB co-infection
Early on in the introduction of ART at HCTC, TB was recognised as the leading serious opportunistic disease, with more than half of patients receiving treatment for TB at the time that they started ART. This not only caused much suffering for affected patients, but patients with TB also had a doubled mortality risk compared with those without TB.3
However, the problem was compounded by the difficulty in diagnosing TB in patients with HIV. We found that only 25% of patients with sputum culture-positive pulmonary TB reported having a chronic cough for longer than 2 weeks. Moreover, we described how sputum smear microscopy and chest X-rays are able to diagnose only a small fraction of the disease present; in turn, one-fifth of unselected patients not receiving TB treatment at the time of first enrolment in the clinic actually have sputum culture-positive TB, and this has led to much greater use of culture-based diagnosis.
Our studies have shown that patients who
have HIV and TB face great challenges in receiving optimum and
timely care when ART and TB treatment services are not
integrated. In particular, ART is often unacceptably delayed.
It has therefore been a huge step forward that, from 2011
onwards, patients have been able to receive TB treatment at
the HCTC, and from 2012, multidrug-resistant
(MDR)-TB patients have also been treated on site. We have
further been able to show that increases in CD4+
counts during ART are associated with major reductions in
long-term TB risk.
Pregnancy
Programmes for the prevention of mother-to-child transmission
(PMTCT) of HIV were introduced at the Midwife Obstetric Unit
(MOU) at the Gugulethu Community Health Clinic in 2001. With an
antenatal care HIV prevalence rate of 29% in Gugulethu, pregnant
women constituted a significant proportion of the patients who
were eligible for ART. Work at the HCTC intensified to develop a
‘fast track’ system that would ensure a quicker route to ART
commencement for pregnant and sick patients. In 2010, the
Desmond Tutu HIV Foundation ran a pilot programme in partnership
with the Western Cape Department of Health, demonstrating that
it was safe, feasible and acceptable to initiate women whose CD4+ counts were
<350 cells/ μl on the same day as their
diagnosis during the first antenatal care visit, and that by
doing so transmission rates could drop to as low as <1%.
4
This approach is now standard in the MOU as part of growing
emphasis on providing rapid ART, and ongoing care and support to
HIV-positive women during pregnancy and post partum.
Adolescents
A review of the programme’s outcomes confirmed what many
first-world HIV programmes and other chronic disease clinical
services were showing: that adolescents often experience a
turbulent transitional developmental phase and may experience
significant challenges in traditional ART programmes. Despite
growing up in the clinic as model patients, older children often
lose their VL control and find it difficult to adhere and attend
services as they move into the teen years. In 2005, the HCTC
recognised the need to be sensitive to adolescent needs, and
organised patients aged 10 - 22 years into four age bands to
attend clinic appointments in their specific age strata. These
age-specific clinics were held in the afternoons with dedicated
youth-oriented counsellors and a fun ‘chill room’ within the
clinic. It is recognised that many of the adolescents are now
growing into adulthood and from 2012 the clinic developed a
Health Care Transition model to facilitate the shift from
adolescent to adult services.
The future
The HCTC was one of the pioneers of community-based ART in South Africa. The early provincial and national treatment protocols, as well as a score of subsequent policies and models, have emanated from this centre. The lessons learnt have been captured in peer-reviewed publications, which have in turn influenced the treatment programmes and policies, not only in South Africa, but in many treatment programmes throughout Africa and further afield.
The Centre has become an example of what can be achieved through a public-private-academic partnership whereby, via careful application of a variety of resources – financial, logistical, expertise and innovation – in a climate of shared partnership and collaboration, much can be ‘learnt by doing’. In a nationwide, public sector health intervention such as the South African ART programme, it is critical that specific facilities and services are maintained, where critical thinking, rigorous evaluation and innovation can be applied to ensure that, in an evolving and dynamic epidemic, the best health models and programmes are being utilised.
The HCTC
has, over the last 12 years, not only screened over 10 000 women, men and children for
the need for life-saving ART, it has in many ways reached much
further to advocate for, instruct, change and improve the way in
which antiretrovirals are administered on this continent and
beyond. Importantly, this clinic – with its strong emphasis on
patient education, patient support and mutual respect –
epitomised the paradigm of the patient-centred approach that
became the hallmark of HIV management. Our hope is that these
lessons will continue to be learnt and written about as we
enter the next decade in which we hope the flames of the HIV
epidemic will be doused and we will see our patients growing
older in good health.
References
1. Bekker L-G, Myer L, Orrell C, Lawn S, Wood R. Rapid scale-up of a community-based HIV treatment service: Programme performance over 3 consecutive years in Guguletu, South Africa. S Afr Med J 2006;96(4):315-320.
2. Orrell C, Harling G, Lawn SD, et al. Conservation of first-line antiretroviral treatment regimen where therapeutic options are limited. Antivir Ther 2007;12(1):83-88.
3. Lawn SD, Myer L, Bekker L-G, Wood R. Burden of tuberculosis in an antiretroviral treatment programme in sub-Saharan Africa: Impact on treatment outcomes and implications for tuberculosis control. AIDS 2006;20(12):1605-1612. [http://dx.doi.org/10.1097/01.aids.0000238406.93249.cd]
4. Black S, Zulliger R, Myer L, et al. Safety, feasibility and efficacy of a rapid ART initiation in pregnancy pilot programme in Cape Town, South Africa. S Afr Med J 2013;103(8):557-562. [http://dx.doi.org/10.7196/SAMJ.6565]
S Afr J HIV Med 2014;15(1):35-37. DOI:10.7196/SAJHIVMED.1040