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| The Mohau AIDS hospice –
Kanana Township, Orkney |
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| Antonia Sipula, contracted by TEBA, is a
home/community based care co-ordinator from Masana Clinic in
Mozambique. Here she is teaching a patient?s wife how to care for
him. |
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Case studies
South Africa |
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7.1 The
delivery of ART to employees
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| Following extensive consideration, AngloGold’s
ART programme was cautiously implemented in three phases. |
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The first phase
started in August 2002 and ran until October 2002. This
preparation phase focused on developing protocols,
guidelines and data systems; recruiting and training;
and negotiating contracts with suppliers and service
providers. |
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The second pilot
phase ran from November 2002 until March 2003, to
test-run the new treatment programme. In this phase 100
patients were randomly selected off the database from
each of AngloGold?s two Wellness Clinics and invited to
the clinics to begin ART. In addition, any patient with
full-blown AIDS who needed ART as a life-saving measure
was offered the treatment. The pilot phase recruited 129
patients on to ART. Overall adherence to treatment ranged
from 81 to 88%. Operational problems identified were
minor. |
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The third phase, or
full roll-out, started in April 2003, and made the
treatment available to any employee who is both
medically eligible and who has undergone HIV testing to
confirm his or her HIV status. |
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| By the end of December 2003, 688 patients
had been offered or been considered for ART; 31 were reassessed
by their physicians as not being ready for treatment, and 78
refused treatment for fear of side effects, reluctance to have
blood taken frequently for testing, concern about the frequent
follow-up visits required, or were unconvinced about the
benefits of ART. Of the 534 that had started treatment, by
year-end 484 were still on treatment. 50 patients stopped
treatment because of the side effects that had presented, their
own failure to collect repeat scripts, forgetting to take
treatment, or death. During this period 12 severe adverse events
(SAEs) occurred. This means that these patients experienced
health problems that may be attributed to the drugs and/or other
underlying or concurrent disease processes*. On the whole,
patients that are on treatment return to work and show clinical
improvement as evidenced by recovering CD4 counts and
diminishing viral loads. |
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| * |
SAEs are health problems of such a severe nature that
they result in death or disability, birth defects or
hospitalisation, and as a consequence need to be
reported to the Medicines Control Council.
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| Practical experience in the delivery of ART |
In April 2003,
AngloGold announced the rollout to all employees of its
groundbreaking ART intervention programme, following an
eight month implementation project.
The implementation project, which was driven by
AngloGold Health Service (AHS), was aimed at developing
an understanding of, and finding solutions to, the
challenges inherent in the provision of ART in the
mining industry. It identified the operational
requirements of providing ART, particularly around
supporting patient adherence to the drug regimen.
Says Dr Petra Kruger, manager of AngloGold?s
HIV/AIDS programme, ?The implementation project was
imperative. Never before had ART been taken to such a
huge population. We were pushing new boundaries in that
we were taking ART out of the constraints of specialist
care and into the domain of primary health care. We also
had to assess if there was any impact on a patient?s
capacity to carry out his or her duties, particularly in
underground working conditions, and we had to monitor
drug sensitivity. In short it required the development
of an unprecedented level of sophistication in our
health care delivery.?
During the implementation project Aurum Health Research,
a subsidiary of AHS, finalised the clinical guidelines,
established a specialist clinical and laboratory support
consortium, secured a drug supply chain necessary to
negotiate Africa access priced drugs, developed training
materials and courses, and formulated an evaluation
protocol based on rigorous data management which made
provision for an economic study of the cost benefit of
ART. During this time intensive training was given to 16
doctors, 22 nurses and 25 lay counsellors.
AngloGold and Anglo American also established an ethics
forum, chaired by Dr Lyn Horn, an independent ethicist,
to provide advice on a range of ethical questions that
arose during the planning of the project. These included
questions around, for example, the selection of
volunteers, ensuring patients? consent is genuinely an
informed consent, and matters relating to the treatment
of dependents and of stopping treatment when an employee
leaves the company and no longer has access to the
internal health service. With the decision by the South
African government to make ART available to all, the
latter two issues have become easier to resolve in
respect of those employees and their dependents who are
South African citizens.
ART becomes medically indicated when a patient?s CD4
count falls below 250 or if he or she has suffered an
AIDS-defining illness. It is estimated that 25% of
AngloGold HIV-infected employees meet these medical
eligibility criteria.
Eligible employees are invited to participate in the ART
programme. They are given detailed information about the
programme and the nature of the treatment, including the
possible side effects, the patient?s own obligations
while receiving the medication and the extent of the
company?s commitments. Each person is then given two
weeks to consider his or her participation.
Says Dr Petra Kruger, ?One of our biggest concerns when
starting to administer ART was the issue of adherence.
We were worried that some of our patients might not keep
up with taking their pills at specified times each day
thus putting themselves at risk of becoming resistant to
the drugs. We have been very encouraged by the way the
patients have strictly adhered to what is a very
demanding schedule. Admittedly early reports indicate
that careful counselling and patient preparation is
working.?
Self-reported drug adherence has been observed at 90%.
This will be validated through for instance
demonstrating a reduction in viral load once a body of
follow-up data becomes available.
But, although the initial phase of the programme has
yielded very promising results, Dr Petra Kruger cautions
against complacency. ?There is still a long way to go
and a number of issues that we have to grapple with,?
she says.
Included amongst these challenges are the possible
emergence of serious side effects associated with the
long-term use of antiretrovirals. The one that is most
likely to cause difficulties amongst mineworkers is what
is known as peripheral neuropathy, which is the loss of
sensation in the extremities such as hands and feet.
?I am also concerned that adherence rates will fall over
time as employees become more complacent about their
health. And there is always the danger that those
receiving treatment will revert to risky sexual
behaviour. That is why it is so important for us to keep
up our
education and training efforts.?
Aurum Health Research will monitor and evaluate the
clinical outcomes and the economic impact of the ART
programme during its first three years. |
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What is ART and how does it work? |
Antiretrovirals are drugs that act against
viruses such as HIV. HAART stands for Highly Active
Anti-retroviral Therapy and refers to a cocktail of three or more
drugs, which in combination are strong enough to reduce viral
loads to very low levels.
When an individual contracts HIV, the
HI virus enters the cells of the body?s immune (or defence)
system where it multiplies before killing that cell and moving
on to infect other cells. The most important cell that the virus
enters is known as the CD4 cell.
As the virus destroys increasing numbers of CD4 cells, the
individual reaches a point where his or her defence systems are
no longer capable of withstanding attack from other diseases. At
this point he or she becomes susceptible to certain infections
and cancers against which the immune system would ordinarily
have guarded the body ? in other words, the HIV-infected person
becomes AIDS-ill. These opportunistic infections ? including TB
? become more frequent and more severe and, in most cases,
eventually lead to death.
ART works by stopping the virus from entering or multiplying
itself in the immune cells of the body. These drugs do not
completely remove HIV from a person?s body, but they reduce both
the amount of the virus in the blood and the damage that HIV can
do to the body?s immune system.
Many people with HIV who have taken these drugs have been able
to lead longer healthier lives. While these drugs cannot cure
HIV/AIDS, they do interrupt the progression of the disease
allowing AngloGold employees to remain productive and to enjoy a
vastly improved quality of life. |
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| 7.2 Caring for the community –
Carletonville Home and Community Based Care |
| The town of Carletonville and its
environs in South Africa?s Gauteng Province, comprises some
250,000 inhabitants. Most of its economically active population
is employed within the mining industry. The most reliable
estimates of the region?s HIV levels indicate a prevalence rate
in the adult population of about 35%.
That is why the role of the Carletonville Home and Community
Based Care project is so important. (See
AngloGold AIDS report 2001/2002). The project remains
focused on four key areas, namely: |
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Palliative care by
volunteer care givers providing home-based care to the
bed-ridden; |
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Support groups for
people living with HIV/AIDS but who are still mobile; |
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Income generation and
poverty alleviation programmes; and |
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The sourcing of
welfare grants, food parcels, schooling and day-care for
orphaned children and youth, particularly those from
child-headed households. |
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| The project came about as a result of the
dire need to provide palliative care to people dying as a result
of AIDS. This spurred a local retired nurse, Ma Montjane, to
mobilise volunteers in the community to provide such assistance
as far back as 1998. |
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As their involvement in the community
increased, the further need to establish support groups for
people with AIDS was also addressed. However, the challenge of
caring for an increasing orphan burden, as first one parent and
then the other died, became almost insurmountable. The
nutritional, health, emotional, educational, residential, legal,
financial and social paradigms were overwhelming for a handful
of lay volunteers.
This is when Heartbeat, an organisation for community
development, came to the rescue. Having formulated a model for
community structures to collaboratively address orphan needs,
they had, with seed funding from a local financial institution,
the means to test their concept, and Carletonville provided an
appropriate case study.
Heartbeat founded the Sakhi-Sizwe Community Child Care forum
with role players such as local schools, churches, the South
African Police Child Protection Unit, women?s and youth
organisations, and CHBC to develop and deliver an orphan care
programme for the increasing number of AIDS orphans in the
region. Heartbeat has since moved on to replicate the model in
other communities with further funding they have received.
Reverend Sunette Pienaar, its General Manager, remains on the
Board of Governors of this, their flagship project.
AngloGold has played a significant role in the successful growth
of the project. Buti Kulwane, an AngloGold social worker, had
for some years been managing the infant project in his spare
time. In 2001, the demands of managing the programme had grown
to such an extent that it became necessary to second him to the
project, first in a part-time and subsequently in a full-time
capacity. With AngloGold?s support he has moulded it into an
organisation that consistently delivers a broad range of
services, whilst exhibiting accountable and transparent
governance. He is ably supported in this by an active and
dedicated Board and a highly disciplined Accounting Officer,
Angelene Smit, who similarly has been seconded in a part-time
capacity by AngloGold. On the strength of this, the programme
has retained funding commitments from both the Department of
Social Development and of Health in addition to private funding,
and has the committed support of local stakeholders who are
actively engaged with twice yearly through general meetings.
Carletonville Home and Community Based Care is truly an example
of collaboration between civic society, government and the
private sector in finding a pragmatic solution, using limited
resources, to mitigating the impact of AIDS on a community. The
project has overcome some significant hurdles in 2003, worst of
which being a payday hijacking at the project?s premises,
followed two months later by those same premises being destroyed
in a fire. The project ended the year on a satisfactory note,
however, with 501 orphans in its care of which 154 are from
child-headed households and 347 from granny-headed households9;
190 people with AIDS in its support groups and an average of 35
terminally ill patients a month receiving palliative care during
the course of the year.
Also see Carletonville Home and Community Based
Care case study in the Community section of this report on
pages.9 Equates to 224 families:
152 granny-headed and 72 child-headed. |
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| 7.3 Home-based care in rural areas |
As the course of the HIV/AIDS epidemic has
matured and manifested its ever increasing numbers of
incapacitated employees, it became clear that, even though it
goes beyond a legal obligation to care for employees beyond the
workplace, morally it was no longer tenable not to do so.
However, a major logistical problem is that the mining industry, including AngloGold, draws its employees from across the
country and even beyond its borders to other southern African
countries like Mozambique, Botswana, Lesotho and Swaziland. So,
employees that have been declared medically incapacitated return
to homes that are widely scattered across the region and are
frequently rural and inaccessible. The challenge was largely one
of overcoming these obstacles to deliver care to them in their
own homes.
Part of the solution was to use TEBA, originally the institution
through which the industry had recruited labour but which now
fulfils a wide range of social roles in addition to its
recruitment function. TEBA has the most extensive and reliable
administrative expertise and rural infrastructure in southern
Africa to link between the mines and the homes of employees. By
further developing TEBA?s rural administrators and through
linking their rural networks to grassroots home-based care
organisations, TEBA is able to offer an assured reception for
terminally ill employees into a local care and support
structure.
AngloGold first signed a service level agreement with TEBA in
April 2002 to implement the programme in four pilot regions,
namely Lesotho, Gaza Province of Mozambique, Northern KwaZulu
Natal and the Eastern Cape. This spread covers 45% of
AngloGold?s workforce?s registered domiciles.
By the end of 2002, an assessment of the pilot showed that: |
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The concept is
appropriate and that TEBA has efficiently leveraged its
infrastructure to effect a rapid implementation. |
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The programme is
widely known and supported amongst the stakeholders
where it is operational. |
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The application of
TEBA?s administrative skills in particular, had gone a
long way to alleviate poverty in the regions where they
operate through effectively assisting clients to access
state welfare grants. |
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The project has subsequently been extended
and a number of other mining companies ? who along with
AngloGold are shareholders in TEBA ? are now making use of this
service. AngloGold retains, with other industry participants, a
guiding role in the development and expansion of the service
through membership of its steering committee.
There is no doubt that the project plays a valuable role in
delivering home-based care to people and regions where there was
none before. By end December 2003, 1,106 ex-AngloGold employees
had registered to receive care from the project, of which 330
have died. About 767 dependents have benefited from the service
during that same time.
Looking ahead there are a number of areas that need
strengthening to ensure the sustainability of the project before
expansion can take place into additional regions. Additional
areas of activity ear-marked for the future include more
efficient referral of terminally ill mine workers to TEBA, the
extension of care to the dependents of mineworkers and
ex-mineworkers, care for orphans, addressing the issue of
poverty as a result of the loss of a breadwinner, assessment of
whether grassroots delivery of nursing care is effective, and
the training, remuneration and emotional support for care
workers. |
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