Case Study Number 9
Building Positive Organisations through Policy Development: Learning from Project Empower’s Experiences www.oxfam.org.au
credits Title:
Building Positive Organisations through Policy Development:
Learning from Project Empower’s Experiences
Author:
Project Empower
Publisher:
Oxfam Country Office in South Africa (Managing affiliate - Oxfam Australia)
Editor:
Gladys Ryan
Design:
LUMO design & illustration (www.lumo.co.za)
ISBN:
978-0-620-48741-2
Copyright:
Oxfam Australia gives permission for excerpts from this book to be photocopied
or reproduced provided that the source is properly and clearly acknowledged.
Disclaimer:
The views in this publication are those of the respective authors and do not
necessarily represent those of Oxfam Australia or any funding agency.
Contact details Oxfam Australia County Office in South Africa (Managed by Oxfam Australia) Oxfam House, 56 Clark Road, Glenwood, Durban, 4001, South Africa Tel: +27 (0) 31 201 0865 Email: infosouthafrica@oxfam.org.au
Oxfam Australia 132 Leicester Street, Carlton VIC 3053, Australia Tel: +61 3 9289 9444 Email: enquire@oxfam.org.au www.oxfam.org.au
Project Empower Room E304, Diakonia Centre, 20 Diakonia Avenue, Durban, 4001, South Africa Tel: +27 (0) 31 310 3565 Email: info@projectempower.org.za www.projectempower.org.za
Front Cover Photo: Gcina Ndwalane/Oxfam
contents ONE
Placing things in perspective
2
TWO
Learning from the Project Empower experience
6
THREE
Lessons to share
16
FOUR
Other issues to consider
20
FIVE
In conclusion
24
Acknowledgements
27
Contact details
27
Useful resources
28
acronyms & abbreviations AIDS
acquired immune deficiency syndrome
ARV
antiretroviral
HIV
human immunodeficiency virus
VCT
voluntary counselling and testing
CBO
community-based organisation
NGO
non-government organisation
CD4 cell
helper t-cells are responsible for coordinating much of the immune response
TB
tuberculosis
CSO
civil society organisation
OHAP
Oxfam HIV and AIDS Program
one
Placing things in perspective HIV and AIDS in South Africa South Africa has one of the highest HIV prevalence1 rates in the world and is struggling to reduce the number of new infections. By now, most South African nongovernment organisations (NGOs) have been forced to pay attention to HIV and AIDS in the communities within which they work and have adjusted their programs accordingly. This does not mean, however, that all NGOs have looked at the impact HIV and AIDS are having on their staff, even though staff are often drawn from those very same communities. South Africans are fortunate to have access to the largest government roll-out of free antiretrovirals (ARVs) in the world, and while access and quality of services are not as good as they could be, people living with HIV can use the state health systems and live a long life. Employers can play an important role in supporting staff living with HIV so that they can nurture their physical and mental health.
HIV in the workplace HIV and AIDS affect workplaces in many ways. The most obvious way is when a colleague is ill and the organisation tries to support her or him. This can take a toll on the organisation – extended sick leave,
absences from work, missed appointments and the possible loss of knowledge and significant relationships with communities and other stakeholders. Having a sick colleague, relative or friend also places people under emotional and material pressure and means that they have less energy for work.
The human factor It is wrong to assume that everyone has all the information they need about HIV and AIDS: there are often gaps in people’s understanding of HIV and AIDS that must be filled. HIV is not a private matter. HIV is a virus – spread most often through intimate relationships – that is deeply affecting every aspect of our lives. Few workplaces can claim not to have been touched by HIV and/or AIDS. Working daily with HIV does not make it easier to accept personally. In some ways it can make it more difficult. Working with HIV and AIDS is not the same as any other job: various studies have shown that longterm HIV and AIDS-related work leads to burnout. Research done by the Depression and Anxiety Support Group shows that a substantial number of home-based care workers are experiencing symptoms of depression compared with their friends and neighbours who are not doing home-based care work.2
1 Prevalence refers to the number of infections; Incidence refers to the number of new infections over a given time 2 http://www.sadag.co.za/index.php/Rural-Outreach/HIV-and-AIDS-and-Depression.html
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In many organisations, staff are able to engage factually about HIV and AIDS with the community, but never spend time with each other discussing how HIV and AIDS affect them personally and how they feel about this. It is not unusual to find people employed in voluntary counselling and testing who are themselves very afraid of having an HIV test.
Why HIV workplace policy All workplace policies and programs that respond to issues of wellness and illness in the workplace and the need for organisations to support the mental and physical health of their staff are important. HIV is an infection that deserves special attention because: • there are so many people infected with HIV • HIV affects young people especially – the age group that is often employed by NGOs • HIV infection can be managed as a chronic condition if individuals have access to appropriate resources such as medical care, psycho-social support and healthy environments. Even organisations whose focus is HIV and AIDS do not always have policies or programs that keep staff up-to-date with HIV and AIDS information, encourage staff to look after their health, and help
managers relate to HIV-positive staff in ways that safeguard the individual’s and the organisation’s wellbeing. Workplace policies can help staff take steps to protect themselves from the impact of HIV and AIDS and can also contribute to improving their practice with communities. People who are knowledgeable and comfortable with HIV and AIDS can be effective change agents in communities. People are more inspired by positive personal experiences than by information and facts alone. An HIV workplace policy should seek to preserve an organisation’s most precious resource: the staff and their skills and experience. An organisation should help any person living with HIV to continue working and offering their valuable skills for as long as possible, all the time weighing the balance between the person and the resources needed to help them continue work.
The role players Oxfam Oxfam Australia manages the Oxfam HIV and AIDS Program (OHAP). This program has tried to find ways to lessen the impact of HIV in society through supporting the work of relevant civil society organisations (CSOs). Oxfam Australia manages OHAP in South Africa on behalf
of Oxfams Novib, Hong Kong, Ireland, Germany and Australia. OHAP currently supports approximately 30 partners in three provinces in South Africa (Limpopo, Eastern Cape and KwaZulu-Natal). All partners work towards a range of practice and policy changes across three thematic areas: • prevention, with particular regard to women and young people • integrating prevention and care services • creating enabling environments in which people affected or infected by HIV and AIDS are able to access their rights. Project Empower Project Empower is a notfor-profit organisation based in Durban, KwaZulu-Natal, focusing on strengthening and supporting civil society (both formal and informal organisations of people) responses to HIV and AIDS. Project Empower works with CSOs responding to the impacts of HIV and AIDS on communities by helping them critically assess the impacts of HIV and AIDS in their own lives and the network of relationships that support them. Using the learning from this personal exploration, Project Empower helps people develop contextual responses to the issues they are confronting.
Photo: Matthew Willman/Oxfam
The partners Operation Upgrade Operation Upgrade’s mission is to assist with social change and development in South Africa through supporting and providing adult literacy and adult basic education and training. The organisation works mainly in the province of KwaZuluNatal, where adult illiteracy is high and HIV and AIDS are prevalent. Operation Upgrade works with the problems of poverty, malnutrition, and HIV and AIDS through literacy development. Its growing network of trained community facilitators works with some of the poorest and most marginalised of people in South African society. CHoiCe Trust CHoiCe Trust (CHoiCe) is a health-focused NGO based in Tzaneen, Limpopo Province. Established in 1997, the organisation’s main focus is community home-based care. CHoiCe offers training to communitybased health workers as well as groups of people through specific courses, including farm workers, men’s groups, children’s counseling groups and the elderly. CHoiCe has trained over 300 volunteer home-based caregivers who care for the sick and disabled, including many orphaned and vulnerable children.
Photo: Cedric Nunn/Oxfam
The KwaZulu Regional Christian Council KwaZulu Regional Christian Council (KRCC) was established in 1996 by the KwaZulu-Natal Christian Council (KZNCC), the provincial structure of the South African Council of Churches, and was mandated to carry out the mission of the KZNCC in the uThungulu, uMkhanyakude and Zululand districts of KwaZulu-Natal. The organisation works in areas of KwaZulu-Natal that are badly affected by poverty and HIV and runs programs addressing HIV (education, awareness and home-based care), democracy, poverty, gender and masculinity. HIV and AIDS Prevention Group HIV and AIDS Prevention Group (HAPG) is over ten years old and has grown to have two additional satellite centres in the Bela Bela Municipality, Limpopo Province. Most of the employed staff joined the organisation as volunteers because they were infected with or affected by HIV and assisted by HAPG. This motivated them to help others in the community. Thus, more than 80% of staff are openly living with HIV. Volunteers work for the organisation for a year, after which they sign a formal contract and are trained and assessed for potential. If they are suitable, and if there is a place for them, they are employed on an annual contract. HAPG has done a lot of work to decrease stigma in the communities of Bela-Bela.
The Hillcrest AIDS Centre Trust The Hillcrest AIDS Centre Trust (HACT) is based in the Upper Highway area of Durban and runs a multi-faceted HIV and AIDS project. HACT is a registered trust and notfor-profit organisation and all trustees are volunteers from the professional sector. The organisation tries to address the impact of HIV and AIDS in a practical and holistic way. All aspects of the HACT project have arisen out of an observed need. That is, where they have seen a need, a plan has been put in place to address it in a way that uplifts and empowers. Many people working with the organisation live openly with HIV, including some managers.
The process As part of its commitment to strengthening the civil society response to HIV and AIDS in South Africa, OHAP provides financial and technical support to partner organisations. Oxfam recognises that HIV and AIDS affects all spheres of society, including the partner workplace. During the period 2006-2008, OHAP asked Project Empower to work with selected partner organisations to develop HIV-related workplace policies. During the first part of the assignment, Project Empower assessed individual partners’ responses to HIV in the
Photo: Gcina Ndwalane/Oxfam
workplace and made recommendations about how these could be improved. In the second phase, they supported a selected number of these partners, who did not have policies in place, to begin the process of developing policy. During phase three, Project Empower assessed an additional six partners and made recommendations about how they could be supported, and a series of five case studies were developed to illustrate the learning emerging from the process. This booklet aims to pass on this learning and experience and to help civil society organisations assess and plan for the impacts of HIV and AIDS on their workplaces.
TWO
Learning from the Project Empower Experience Much of the work around mainstreaming3 HIV has focused on the external (organisations’ programs), and only recently have organisations begun to pay attention to the impact HIV and AIDS may have on the organisation. Any work around mainstreaming HIV and AIDS must begin with an assessment of what each organisation has achieved in mainstreaming HIV, either externally or internally. While some CSOs and individuals they employ have undergone HIV mainstreaming training, the way they implement it varies considerably from organisation to organisation. It is not enough to assume that if an organisation has a policy and has received some training, then the issues have been mainstreamed. The test of policy is in how (or even whether) it has been implemented, and what the results of that implementation have been. In the last few years it has become evident that there are no clear borders between communities and organisations that service them when it comes to the impact of HIV and AIDS, and while CSOs have spent a lot of time and resources alerting communities to the potential threats HIV and AIDS pose, they have been slow to respond to the impact on their own structures. One could go as far as to say a number of CSOs have ignored, and continue to ignore, this impact.
The theory behind the work Project Empower believes it is important to work from people’s own experience, creating the space for them to explore their own and each others’ experiences of HIV and the meaning of these experiences. Before doing any work on developing an HIV policy with an organisation, they explore individuals’ and the organisation’s own experience of HIV and AIDS. They encourage people to look deeply into their own lives in order to recognise the ways that HIV affects them. Just as individuals are encouraged to “live positively with HIV”, they encourage organisations to embrace the reality of HIV and explore strategies for organisational living that will enable them to survive well with HIV. Project Empower works from the belief that organisations are living systems and that they should model and experience personally the work they do with communities in order to make this work vibrant, dynamic and authentic.
Outlining a process: The Operation Upgrade experience In Project Empower’s experience, no two organisational processes are the same. However, the process they went through
3 Mainstreaming HIV refers to organisations responding systematically to HIV in all their work
06 case study: project empower
Photo: Cedric Nunn/Oxfam
with Operation Upgrade provides a useful example of a heartfelt, genuine attempt to engage with the issues, and provides a model of the principles that Project Empower promotes in its work. Like many other organisations, Operation Upgrade was motivated to develop an HIV policy because of staff becoming ill. They finally adopted a policy that drew broadly on existing published policies and guidelines, but what was unique was the amount of time and energy the entire organisation devoted to the process.
It took well over a year to develop the HIV policy, with help from a Project Empower facilitator. Had Operation Upgrade delegated the task to a small team to write and distribute a draft, this could have been completed in a few weeks. Instead, the director decided that all staff or as many as possible should be involved every step of the way. The organisation did not set limitations on staff time and neither did it set a deadline to complete the policy 4.
Starting out: Let everyone have their say The best place to start is to allow all participants to speak about their own and their organisation’s experience. During
these discussions, questions that need factual answers will come up and can be answered, or can be collected and answered in a separate session. While the organisation can do much of the rest of the work on its own, it really helps to have an external facilitator.
Our first two meetings at Operation Upgrade did not look at the contents of policy at all, and instead involved open-ended discussions updating staff knowledge of HIV, prevention, treatment, care and support of people affected. They discussed the fear of HIV, personal experiences of HIV and the inextricable links between HIV, sex and death. The discussions were intense and moving as each person revealed how their personal and working lives had been touched by HIV.
We found it difficult to set up meeting times in an organisation as busy as Operation Upgrade, with staff often away for weeks running training programs in remote rural areas. But the organisation stayed true to its commitment to full staff involvement and workshops were set up months in advance.
The aim of the discussions is to enable people to speak about their experiences; to reinforce the understanding that everyone is affected by HIV; to give everyone the opportunity to speak about their feelings; and to help develop empathy and reduce stigma.
We found it difficult to set up meeting times... but the organisation stayed true to its commitment to full staff involvement and workshops were set up months in advance. Making it personal: Organisational responsibility During the next phase, Project Empower asks participants to consider how they would like the organisation to respond to them if they were living with HIV. This is best done individually or in small groups. While the aim of this session is to begin to examine how the organisation should respond to people living with HIV, it is also another opportunity for people to embrace the reality of HIV in their lives.
We worked with Operation Upgrade through the process of personalising HIV in the workplace: imagining themselves to be living with HIV and discussing what they would need from the organisation if this were the case. Surprisingly, the majority of staff said they would need their colleagues to treat them exactly the same as a person not living with HIV.
4 Extracts from Project Empower progress reports
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Other organisations have said that it is important not to “pamper” or “coddle” people living with HIV because this leads them to feel that their health is seriously damaged and that they are very different from other people. Operation Upgrade staff strongly echoed this view, and agreed that though there would be special needs such as for time-off to visit clinics, individuals would still want to continue to contribute to the organisation as their colleagues did.
Over the course of their work around HIV policy in the workplace, many participants have commented that it was this session that really helped them confront what it could feel like to be living with HIV.
Making it personal: Individual responsibility As part of this session, Project Empower asks participants to think about what they would be prepared to offer the organisation if they were living with HIV. This helps balance the first part of the question:
Time, people and money are key resources for any civil society organisation but of these, people are the most critical. 5 Medical insurance
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participants see that people living with HIV can contribute to the organisation as well as receive support from it.
Although people expressed a need for disclosure, they agreed that this need not be to the entire organisation, and that it would be important to have an individual available to ensure they managed their health as well as they could.
Moving to the practical: The organisation and its resources Once these questions have been answered and clarified and participants have reached consensus, the process moves onto the third phase. Participants must now think for the organisation. The questions they must think about are: what resources does the organisation have available to help support people living with HIV?; and, what would the organisation require from people living with HIV? These questions are about allocating resources. The director and/or financial manager are normally responsible for allocating resources. They can become unpopular for not releasing resources in the way the rest of the staff would like, and their decisions are often challenged. Getting staff to think about how resources are allocated forces them to weigh up priorities and consider
what is feasible. Participants are able to see that allowing indefinite paid sick leave, for example, would place a massive strain on other staff members who would have to fill the gap; or on financial resources if another person were to be hired. Time, people and money are key resources for any civil society organisation but of these, people are the most critical. In an organisation like Operation Upgrade, where knowledge has been built up over years of hard work, no outside education and training can compensate for this.
This came down to a very practical issue: access to medical aid 5. Like many civil society organisations, Operation Upgrade offers modest salaries with no extra benefits, and staff members need to either pay for private medical treatment or use already stretched public health facilities. Staff wanted the organisation to support their membership of a medical aid. The director could not see how this might be possible. The debate was not resolved but resulted in agreement to explore the possibilities, and a commitment that the organisation would assist with medical expenses wherever possible.
During this session it is important to encourage a view that staff living with HIV will remain part of the organisation in all respects – that they will be supported and
encouraged but expected to look after their health and contribute positively to the work of the organisation.
The outlines of a policy From these sets of discussions (about personal and organisational needs and resources) an organisation can start drawing up an outline of a policy. For example, a person living with HIV would feel the need to be treated normally and not face stigma and discrimination. This would give rise to a section in the policy about how the organisation will work to create an environment that is enabling for people living with HIV. The need to attend clinics during work hours will lead to a section on leave or time off.
Having listed the needs and wants of staff living with HIV and the organisation, we began to formulate an outline of a policy. We created broad content areas such as the need for ongoing education and information, an enabling environment within the organisation, resources such as additional time-off for medical treatment, services such as access to counselling, and support such as the possibility of choosing a member of staff as a treatment buddy.
In small groups, people worked together to begin to phrase content under each of
these headings, and shared and debated these with their colleagues until everyone was satisfied. Throughout this part of the process, everyone tried to bear in mind the essential balance between the needs of the individual and the needs of the organisation.
Fleshing it out The organisation needs to spend as much time as possible on this process. During this phase, donors should be lobbied about whether they would be interested in supporting those aspects of the policy that require financial resources. It is important to include donors in this aspect of the discussion. It is easy for organisations to be idealistic about what they would like to offer: extra medical aid benefits, paid medical expenses and extended paid leave are common responses. Donors are often flexible about how an organisation can allocate money, but not always able to increase their financial allocations. Participants need to be creative and look for ways of supporting colleagues living with HIV other than through money. Providing information, limited time off, access to an in-house counsellor, and ways to reduce stress in the working environment are all examples of responses which do not need extra money.
A very rough policy will come out of this process and a development team needs to scan other available policies to see what needs to be added. The product of this shaping process can be sent back to staff and management to check whether they agree, but it is important that no substantial changes are made during this process. Once staff and management have endorsed the policy it should go to the board for final adoption (it is important that board members have been kept abreast of the process).
We finally had a very rough draft of a policy which a staff member added to after some desk top research. We looked at other existing policies and policy guidelines, added suggestions and comments, rephrased headings, and added where something critical had been left out.
The facilitator worked through the results of the desk top review with the director and the person who did the review. We tried to work the draft into a coherent document that could be usefully discussed by the team.
Finally, we presented the document to staff for final review, carefully taking them through each section and allowing time to reflect on and discuss content and phrasing and check for inconsistencies.
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Making the policy real Adopting the policy is important. The real challenge, however, lies in making sure staff continue to embrace it, that it is implemented, and that it is regularly reviewed to make sure it remains relevant to the needs of the organisation and the progress of the HIV pandemic, and stays in the collective mind of the organisation. An implementation team is an excellent way to carry the policy forward, or in the case of a small organisation, at least an HIV workplace champion. If an organisation recognises the importance of an implementation team or champion, then their outputs in relation to these roles must be integrated into the organisation’s normal performance management systems. Operation Upgrade has since finalised their AIDS Workplace Policy, and it has been adopted by staff and approved by the board. As a
result of the process, staff have found it easier to disclose HIV status to the director and they feel their condition has become easier to manage. The organisation has also appointed an AIDS co-ordinator – a currently employed staff member whose role has been expanded.
Experiences from other organisations Other OHAP partners have also made efforts to respond to HIV in their workplaces and have each ended up with different policies, appropriate for their organisations.
Another point of view: CHoiCe’s chronic illnesses policy Responding to HIV in the workplace does not always mean having an HIV policy. In the case of CHoiCe, HIV is included along with other medical conditions in a life threatening illnesses policy.
CHoiCe is based in Tzaneen in the Limpopo province of South Africa and was founded in 1997. Staff and volunteer caregivers work with rural communities caring for the sick and disabled, including many orphaned and vulnerable children.
CHoiCE treats HIV as just one of many life-threatening illnesses such as hypertension, heart disease, cancer and
Photo: Cedric Nunn/Oxfam
Focusing on HIV alone discriminates against people living with HIV as well as people living with other lifethreatening illnesses, all of which may require that an employee receive special help to continue working for as long as the resources of the organisation will allow.
diabetes. They believe that focusing on HIV alone discriminates against people living with HIV as well as people living with other life-threatening illnesses, all of which may require that an employee receive special help to continue working for as long as the resources of the organisation will allow.
Now, with ARV treatment being more widely available and effective, CHoiCe argues that HIV is in many cases less life threatening than other commonplace illnesses affecting South Africans, about which little fuss is made.
Like many other organisations, CHoiCE was motivated by experience to develop policy - in this case, a staff member developing cancer and needing to undergo chemotherapy and related
treatments. Her illness was painful and involved extensive and physically burdensome treatment. It was emotionally difficult for her and for those close to her, including her colleagues, and potentially as life threatening as HIV.
The organisation was challenged to respond as supportively as possible while at the same time ensuring that the person concerned was able to continue contributing appropriately to the organisation, and that CHoiCe’s work continued. CHoiCe takes every opportunity to educate staff and community about health and wellness generally, and about all illnesses, including HIV. They encourage early and regular testing for a range of lifethreatening illnesses. Part of the role of policy is to raise awareness and educate people, and CHoiCe needed to set an example in this regard. They express this in their policy.
CHoiCe’s vision is to have: • an informed and aware workforce that is empowered through knowledge to take charge of their health and to make decisions to protect themselves from infection, ill-health and discrimination • a sympathetic and responsive workplace that offers a supportive environment that can maximise the productivity of those who are living with a life-threatening illness • a workplace that responds constructively to employees living with HIV and AIDS
The route of treating HIV and AIDS as any other life-threatening disease is arguably one way of challenging the stigma attached to these conditions.
Simple is powerful: Lessons from the KwaZulu Regional Christian Council The KwaZulu Regional Christian Council (KRCC) wanted a policy and program that would recognise the many ways in which physical, mental and spiritual ill-health could affect staff and was determined to create a workplace that encourages wellness.
KRCC was established in 1996 by the KwaZulu Natal Christian Council (KZNCC), the provincial structure of the South African Council of Churches, and was mandated to carry out the mission of the KZNCC in the uThungulu, uMkhanyakude and Zululand areas of KwaZulu Natal. This region is the heart of KwaZulu Natal and has been the site of some of the province’s most difficult experiences. It has seen political conflict, and has high levels of HIV, tuberculosis (TB), drug resistant TB and malaria infections. The organisation works in areas of KwaZulu-Natal that are badly affected by poverty and HIV.
Like CHoiCe, KRCC decided on a general wellness policy instead of one specifically for HIV and AIDS. Through
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the process of developing a policy, KRCC learnt a number of things, most importantly that having a workable policy need not be something legalistic and removed from the organisation. It also need not be expensive.
It began with discussions between the director and Project Empower. After these initial discussions to talk about the organisation’s vision with regard to HIV in the workplace, the discussions broadened to involve staff. Project Empower facilitated a process with all staff where they were given an opportunity to input into the policy. Finally, this was taken to the board.
Because everyone has been involved in developing the policy, it has become a living document, very much part of the everyday reality of the organisation.
Initially a concern was the budget, but the organisation realised that most of the things that should be part of a wellness policy were in fact practices KRCC was committed to in its programs. Issues such as a person needing to go on ARVs simply meant that KRCC should provide the space and support for this to happen, leading to a more contented staff member. They realised they were
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not starting something new but having to put into practice those things they themselves promoted for their constituency. For instance, KRCC encourages voluntary counseling and testing (VCT). They have teamed up with an organisation called New Start who has come to KRCC and tested staff who have volunteered. This means that when they go out into communities to do the same, they use themselves as examples. So they were not starting something new but instead doing things to enhance their existing programs.
Another simple measure put in place was having a first aid kit, which cost around R500 to set up, and small amounts monthly to keep it filled. KRCC also instituted something called the “ministry of presence” – someone from the organisation providing support through simply being there and listening.
Along with the wellness policy, KRCC looked at other existing policies and found synergies. For example, the conditions of service document covers issues such as time off and leave, and so they looked at these documents collectively and complementarily.
According to the director, Mxolisi Nyuswa,
“Every activity we do now, we always ask ourselves if it is in line with policy. We have staff reflection sessions where we talk about issues such as gender and HIV; and if we go back to our policy we see we need time off away from the office where we can talk about health and social issues – and we had been doing this. So our policy is not something from heaven; it is what we do daily. And Project Empower facilitated the process in such a way that we could realise this. It is not complicated and outrageous and out there.”
And it’s had an effect on everyday life. For example, simple actions such as the office’s clubbing together for tea
“So our policy is not something from heaven; it is what we do daily. And Project Empower facilitated the process in such a way that we could realise this. It is not complicated and outrageous and out there.” Mxolisi Nyuswa
and lunch have changed: now, instead of always having meat, there is an effort to include healthier foods such as fruit and vegetables. So even at this level, the policy is being lived out.
Through the process of discussing health and wellness, and HIV, TB and malaria, other illnesses came up for discussion and staff realised that there was a lot that the organisation could be doing to increase awareness of staff and their families about physical, mental and spiritual health. They discussed illnesses such as heart disease, diabetes, cervical, breast and prostate cancer at length, as well as depression, anxiety and alcohol and other addictions.
KRCC realised that they needed to respond to all these conditions as well as spiritual health needs. The organisation resolved to find the funds to support an annual health and wellness retreat for couples, where health testing, information, discussion and prayer sessions would be integrated.
The policy is short – no longer than five pages – but its contents mirror the wishes and concerns of staff and the board. People own the policy and understand it because they have all been party to its development and can see their inputs in it.
Doing what needs to be done: The HAPG experience Some workplace policies that address HIV and AIDS can be really effective without saying very much at all. The HIV and AIDS Prevention Group (HAPG) in Bela-Bela, Limpopo Province, has adopted a short, succinct policy that provides meaningful guidance to its staff members.
The policy document records only the bare minimum of the organisation’s support to staff living with HIV, and this is for the purpose of ensuring and displaying equality. To understand the policy and how it works, we really need to understand the work of the organisation, as the policy is embedded in the learnings and services of the organisation.
HAPG started as an HIV prevention organisation, but grew along with the epidemic to offer treatment, care and support to people living with and affected by HIV. HAPG is well known for its holistic and stigma reducing approach to HIV, and they attribute the remarkable openness of the many HIV positive staff to this work.
The HAPG clinic offers a “one stop shop” for people affected by HIV and TB: patients coming for VCT can have their CD4 count done and can also enrol for treatment at the wellness clinic, which
HAPG’s approach of employing patients has had a marked effect on the organisation’s work: it has contributed greatly to a climate of reduced stigma in the clinic and the community that it serves.
screens and treats patients for opportunistic infections associated with HIV. This includes routine pap-smear screening, eye testing to detect the possibility of HIV-related eye problems, and screening for diabetes. HAPG also does home-based care, works with children affected by HIV and co-ordinates a structured support group program for people living with HIV.
Many of the staff are patients of the clinic: they initially received services from the clinic, then started working as volunteers for HAPG, and then moved on to permanent employment. They are still patients of the clinic and form the backbone of the organisation’s staff. HAPG’s approach of employing patients has had a marked effect on the organisation’s work: it has contributed greatly to a climate of reduced stigma in
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the clinic and the community that it serves, as there is little that separates staff from patient; and it has put a unique slant on their HIV workplace policy.
Unlike many other organisations, HAPG did not need to worry about how to provide services to staff affected by HIV. These were already offered to them through the clinic - which is what had led to many of the staff being employed already. The policy does not detail services offered to staff through the clinic: it is taken for granted that staff can receive VCT and treatment and become members of the support group program. Individuals are encouraged to monitor all aspects of their own health, such as CD4 counts, viral loads and weight changes.
HAPG’s HIV policy is effective because staff members benefit from the work and ethos of the organisation: a holistic and effective set of integrated HIV, TB and other related health services that work with people medically and psychologically to overcome stigma and strive for individual and community wellbeing.
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Supporting staff working with HIV and AIDS: Lessons from Hillcrest AIDS Centre Trust The Hillcrest AIDS Centre Trust (HACT) has a well-established reputation of offering health services to people infected and affected by HIV in the Upper Highway area near Durban in KwaZulu-Natal. Perhaps you have heard of their handcraft shop and their famous “Little Travellers” – tiny beaded dolls with passports that take the message of HACT to all corners of the earth?
HACT employs about fifty five people and more than seventy people volunteer their services to the organisation. Many people working at all levels of the organisation live openly with HIV.
The director says that HACT is trying to create passion and compassion throughout the staff, and they need to make sure that staff members stay energetic and committed to their work. But they do highly stressful work, and management acknowledges the reality of burnout and compassion fatigue for people involved in care work.
This is not just a danger for staff involved in direct care, but also for those who work behind the scenes, in finance and administration. At the same time, the
organisation pays very average salaries, so staff members do not have excess money to spend on therapies like gym membership and massage, for example.
HACT has tried to relieve the burden on staff by offering well-thought-out and generous leave packages. Once a quarter, all staff get two extra days leave in addition to their annual leave; and after working for three years, all staff get two months leave. Again, this is in addition to their annual leave. Annual leave is fifteen days plus two weeks extra leave over the Christmas period and sick leave is offered at 36 days over a three year period, but because of the negative psychological impact of staying at home, sick staff members are encouraged to continue coming to work even if their output is poor.
Because of the different kinds of leave available, the organisation is flexible if a person needs extra leave and one category has expired. Borrowing from another category is allowed. Sometimes staff members may need extra leave and these individuals present their case to the board, who decides on the route to take.
The supportive and thoughtful environment at HACT has allowed for creative, inexpensive ways of taking care of staff.
Photo: Matthew Willman/Oxfam
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lessons to share Civil society organisations respond in many different ways to the impact of HIV on their staff. Responses are not always positive and can include: • managers assuming staff know everything they need to about HIV, that there is lots of information available to people from the media, and that the workplace has no role in educating staff about HIV • some, especially religious organisations, believing that HIV will not affect their staff • some thinking that HIV is a private matter, and that experiences, feelings and attitudes related to HIV and AIDS should be addressed in places other than the workplace • a belief that raising issues around HIV and AIDS among staff in the workplace will make them feel stigmatised • managers feeling afraid to open matters up for discussion in case they and the organisation cannot cope with the needs of staff. An HIV policy can be a management tool describing benefits and restrictions, it can be an effective aid to help staff accept the reality of HIV and AIDS and make positive changes in their lives, and it can guide management on how to respond to the impact of HIV and AIDS. But this can only happen if everyone is appropriately involved in developing the policy. Project Empower has learned a number of lessons from its many years of experience.
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Don’t assume that a person living openly with HIV is the best person to work on HIV policies and programs. One: Involve staff In the case of large NGOs, it is not always possible to have everyone involved every step of the way, but there are ways of making sure that everyone is consulted and then kept informed of progress. Try to involve all staff in the initial sessions involving information, feelings and experiences. From these sessions, you can elect staff representatives to work further on developing the policy and reporting back to their groups. Try not to let this representation fall on the shoulders of people who normally act as staff representatives. HIV is not just another task, and working on a policy while representing others requires a person who is passionate, sensitive and committed to HIV. Don’t assume that a person living openly with HIV is the best person to work on HIV policies and programs; some organisations have found that this is just too much of an extra burden on someone whose energies should be used to maintain their own wellbeing.
Two: Make enough time for consultation and feedback At all stages, allow enough time for consultation and feedback. This may seem too time-consuming, but in the long term an effective policy will ensure that the organisation is able to function well in the face of HIV and AIDS. Consultation needs to be meaningful and provide opportunities to share and analyse experiences, engage with issues, and chart a way forward.
Three: Involve other key stakeholders The director and managers of the organisation should be involved in and support the process. It is helpful for management to be involved in the sessions where staff share experiences. This helps them understand how HIV is impacting on staff and gives them an opportunity to share their own experiences, highlighting that HIV affects everybody. It also motivates managers to support the policy development process and the implementation of the policy. Managers have an important role to play in outlining what can be made available and in seeing that the policy is implemented effectively. Members of boards are often asked to ratify policy once it has been developed, yet excluding them from the process means they do not fully understand why the policy is necessary. At best, they should be included, or at least, informed from the beginning.
Donors should be informed and consulted as they are the people you will lobby for an increase in funds to pay for HIV in workplace activities.
Four: Resources When people think about HIV policies, often what comes to mind are the complex and expensive provisions made by international NGOs around anonymous access to ARV treatment. These policies are intimidating, especially for NGOs operating in the resource-poor South African environment. There are many HIV policies that are relevant and meaningful, and which work well for their organisations, that do not require the organisation to spend any extra money. These policies are especially possible in an environment where there is free public access to medical services. Some
Private health facilities are more efficient and caring, offered in pleasant environments, and do not require patients to wait in long queues for hours. But... importantly, not all private health care practitioners are properly experienced in treating and managing HIV.
organisations believe that it is necessary to offer staff private medical aid benefits. There are certain advantages to belonging to a medical aid. Private health facilities are more efficient and caring, offered in pleasant environments, and do not require patients to wait in long queues for hours. But they are very expensive, do not adequately cover out-of-hospital medical costs (which are very important for people living with HIV) and most importantly, not all private health care practitioners are properly experienced in treating and managing HIV. Project Empower advises organisations to think carefully about whether medical aids will really address the health care needs of staff living with HIV. Most meaningfully, an HIV workplace policy requires an organisation to reallocate employees’ time, to investigate appropriate referrals for people living with HIV and to ensure that people living with HIV are offered the support they need.
Photo: Gcina Ndwalane/Oxfam
Five: Participation and process
What should go into a policy?
Organisations must consider the contents of the policy, the process undertaken to develop it and the environment within which the policy exists.
Statement of principles This is usually placed at the beginning of an HIV policy and includes statements describing the way the organisation views HIV and AIDS and people living with and affected by HIV. It can contain statements declaring the organisation to be free of discrimination, welcoming the employment of people living with HIV and recognising the way HIV and AIDS impact on men and women differently. Most of these principles can be drawn from the discussions held by staff around how they would like to be treated by their organisation if they were to be living with HIV.
A policy developed through a participatory, inclusive process allows for staff to own it and increases the chances they will use it and even demand it if necessary. Such a process also increases staff expertise on HIV, AIDS and related issues within the organisation because it encourages participants to want to know more and research more on the issue so that the policy becomes relevant and up-to-date. An inclusive process also allows staff to reflect on attitudes that might be detrimental to the policy and to individuals in the organisation, therefore allowing a more positive organisation to emerge.
Six: Policy environment The culture and values of the organisation need to allow policy to be “alive� in the organisation. A good policy is of little use in an environment where relationships are clouded by a lack of understanding, hostility, suspicion and fear. A policy can be used to its fullest potential within an open, trusting, compassionate and enquiring organisational culture.
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Objectives In this paragraph, the organisation states its reasons for developing the policy and summarises what it wants the policy to achieve. Stating the objectives of the policy is important. It helps staff members understand what the policy is trying to do; and helps when the organisation is evaluating how effective the policy has been. Recruitment and employment In this section, the organisation speaks about its stance towards employing people living with HIV. In South Africa, it is illegal to require staff to undergo preemployment HIV testing (there are some exceptions to this rule, mostly involving
Photo: Matthew Willman/Oxfam
people who will be employed in very dangerous jobs), but it is still important to make a commitment to employing people living with HIV and to supporting their wellbeing once they are working. Confidentiality The general guidelines around confidentiality are well worked out in South Africa. When an individual discloses to another in the workplace, and this disclosure is part of their professional relationship, then confidentiality has to be maintained. Although this is widely understood, it is still important to make the statement in the policy to serve as a reminder and to reassure a person who may be thinking about disclosing. Continuing information and education Part of the reason that many people feel intimidated by information about HIV and AIDS is that scientists and doctors are continually making new information available. Many organisations commit themselves to ensuring that new information is made available to staff members and usually allocate this task to one individual, providing resources such as internet connectivity, money to buy publications and staff time to make sure it does happen.
Performance management, grievance and disciplinary and incapacity procedures Most organisations have existing procedures that guide the organisation in managing staff. There does not need to be any exception made for people living with HIV, and this section of the HIV policy usually simply makes reference to these procedures and tells staff members where they are written. Revision Making sure that the HIV policy is upto-date and that it meets the objectives is very important if the policy is to stay relevant and useful. In this section of the policy, the organisation states how often the effectiveness of the policy should be evaluated and how this should be done, as well as how revisions to the policy should be made. It is good to try to make this process as open as possible to all staff. Prevention of HIV Preventing HIV in non-infected people and preventing secondary infection are as important as treatment, care and support for infected people. In this section, the organisation can discuss ways in which it can help staff prevent HIV infection and secondary infection. Some ideas could be making sure that male and female condoms are readily available, having regular VCT clinics, and making sure that staff members do not spend too much time away from their partners.
Wellness management Staying healthy while living with HIV requires information and resources. In this section, the organisation can commit itself to helping people living with HIV stay healthy and give details about how it can do this. Sick leave and prolonged illness Sometimes, it may be necessary to consider giving additional sick leave or extra leave to a member of staff. Organisations need to think carefully about how they do this. Additional paid leave places a hidden burden on an organisation as the incomplete work from the person on sick leave has to be picked up either by another staff member or an additional person hired to take his or her place. If a little extra money can be put into the budget to help cover such situations this would be very helpful. Access to HIV-related health and psycho-social services Some organisations can provide access to medical aid for their staff, while others cannot as medical aids are very expensive. Even with a medical aid, though, there is no guarantee that a person will get excellent medical care for their condition. Some organisations invest time and energy in investigating good HIV-related private and public medical and psycho-social services and keep these lists updated so that staff and their families can make use of the services.
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other issues to consider It is important to look at the impact of HIV holistically. This means considering all other issues that may have an impact on people and the organisation.
HIV, AIDS and other illnesses In the last few years, TB incidence has increased in KwaZulu-Natal, and we have also seen a rise in the number of people infected with drug resistant TB. Together with HIV, this has created an urgent need for appropriate responses and to understand the impact of this “double epidemic” on organisations. In the context of HIV, the increase in the number of TB infections is a challenge organisations must confront. Practical solutions to preventing TB in the workplace include ensuring adequate ventilation – even in winter – in offices, workshop venues and vehicles, as well as educating staff members about “cough etiquette” (always coughing into a handkerchief and not into open air or even into one’s hand) and carefully throwing away handkerchiefs after coughing. Organisations need to ensure that staff members can identify the symptoms of TB and know where and when to seek help if symptoms continue longer than two weeks.
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A good policy covers HIV as well as other illnesses, sometimes referred to as chronic or life-threatening illness. Chronic and life-threatening are not the same. Chronic illnesses are illnesses that you can live with for a long time if you manage them correctly. Many people argue that HIV is just another chronic illness and if a person regularly tests their CD4 count and viral load and takes treatment as prescribed by their doctor, they can expect a full and healthy life. People who argue for HIV to be included under a chronic illness policy place an emphasis on encouraging all individuals living with chronic illnesses to take control of their health and try to make necessary resources available for them to do this. Policies must address measures that need to be taken when an individual is suffering from a life-threatening illness. These can include some HIV-related infections, as well as TB and cancers. In these instances, extended sick leave may be necessary and an organisation needs to think ahead about how much paid leave it can give to any individual. Having this clearly set out in a policy that has been developed in a neutral space (that is, not in response to any one person’s experience) takes the burden off decision-makers in a time of crisis and allows all members of staff to know what they might expect if they were to experience a health crisis.
Multi-tasking Civil society organisations are becoming increasingly complex and can employ staff members with specialised skills. In order to survive well as an organisation living with HIV, it is important to ensure that there is always another person who knows something about each individual’s job so that if the person is absent for some time from work, there is someone who can fill in for them.
Prevention and infection control It is important to address infection control in the workplace. Infection control is a term that is used in HIV policies to refer to measures to prevent the transmission of HIV, particularly in the case of an accident. Many policies focus only on HIV prevention, and forget that preventing airborne and waterborne infections is also an important part of maintaining an organisation’s health. Measures to control infection should consider HIV as well as other illnesses, including the most common ones. Colds, influenza (flu), diarrhoea and TB are examples of infections that can spread through a workplace if staff do not adhere to basic infection control measures. These infections can be particularly serious for colleagues who are living with HIV: organisations need to be aware of the need to protect all staff, negative and positive, but especially those living with HIV, from all
infections. This may mean that people who have a cough or flu are encouraged to work from home until they are feeling better.
Gendered HIV policies Ideally, HIV-related policies should carefully consider the differing experience, needs and responsibilities of men and women. Women frequently take the main responsibility for care in families and communities, which means they are often immediately affected by HIV even if they are HIV negative themselves. Organisations that employ women need to be aware of this and the burden these responsibilities place on them. The policies need to reflect such circumstances and take them into account.
Disclosure All workplace HIV policies struggle with the contradictions of disclosure and confidentiality. How the organisation handles their first disclosure usually determines whether or not more disclosures will follow. If an organisation has a culture of talking openly, often and non-judgmentally about HIV, it is more likely that staff will feel safe to disclose.
People often believe that disclosing their status is an important part of living with HIV. While it can be helpful to a person to speak about their HIV status to other people, this needs to be in the hands of the person concerned and done purposefully. People often believe that disclosing their status is an important part of living with HIV. While it can be helpful to a person to speak about their HIV status to other people, this needs to be in the hands of the person concerned and done purposefully. An organisation does not have the right to demand or even expect a disclosure, although if a person is trying to get support from their employing
It is important, however, to question the assumption that a person living with HIV needs to disclose their HIV status generally, or at work particularly.
Photo: Gcina Ndwalane/Oxfam
organisation, it is important that a policy specifies who a disclosure should be made to and has strict rules around confidentiality. If a staff member living with HIV wishes to make a general disclosure to their colleagues, they should be supported in doing so, but an organisation must be aware that it may need to offer support to the person’s colleagues as well.
Benefits Inevitably the issue of staff benefits arises when addressing HIV in the workplace. Most organisations see extended sick leave as an adequate and appropriate response to workers’ illnesses. Few, however, have actually cost it or budget for it. In extreme cases, extended sick leave or other leave benefits can jeopardise the work program of an organisation and an organisation needs to think carefully about how realistic these are. When trying to determine what benefits to make available to colleagues living with HIV or other illnesses, it is useful to remember that it is the mission of the organisation that brings everyone together as colleagues. The reason we develop HIV-related policies is to ensure that our organisations are able to live positively with HIV and continue to fulfil their missions; and
Photo: Gcina Ndwalane/Oxfam
the staff in the organisation are central to fulfilling those missions. It is important to keep a balance between what a person can offer their employing organisation and what they need in return from that organisation. An organisation can give support in many ways that do not have big financial cost: counselling services, access to treatment, access to support groups, and an open and caring environment are just some of the ways organisations can give extra support to staff.
If staff are involved in the (policy development) process throughout, they feel ownership of it, and are more likely to use it and keep it alive. One suggestion worth investigation is a national medical scheme for NGOs and community-based organisations. This is a challenge that donors could think about.
Making policy accessible Once a policy has been developed, one of the challenges is to keep it alive in the organisation. This goes back to having a process that involves all staff. If staff are involved in the process throughout, they feel ownership of it, and are more likely to use it and keep it alive. Some organisations found that an implementation team or HIV champion has helped. Others make sure the policy is made available when a new staff member is inducted, and staff have to sign this policy.
HIV policy responses to the needs of volunteers Many HIV organisations use volunteers but few address the special needs of volunteers in their HIV or any other organisational policies. Volunteers have become the backbone for organisations in the HIV sector and are most often hugely affected by HIV. They must be taken into account in organisational policies. Some questions to consider: • What constitutes a volunteer? • What can a volunteer legitimately expect as reward for her (or his) services? • In what ways does an organisation protect or not protect volunteers? • What training can an organisation offer volunteers outside of basic skills needed to deliver services? • Should volunteers be formally contracted to an organisation? • Can volunteers be protected by the South African department of labour schemes such as those concerning unemployment benefits and workers’ compensation? • How can organisations help mitigate the impact of HIV on volunteers as well as staff? One of the issues is the vast differences in the way organisations view volunteers, and responses by single organisations will not be effective. This is perhaps an issue that donors could address more effectively.
Photo: Matthew Willman/Oxfam
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in conclusion Much has changed in South Africa in relation to HIV and AIDS since this process began. Most important among these changes, and very relevant to the topic under discussion, has been government’s rollout of the largest antiretroviral treatment program in the world. When this process began, very few organisations had considered the need for policy of this nature and many were hesitant to start a process that most believed would need a lot of money to implement. While the cost of implementing HIV workplace policy has reduced significantly, the issues that caused organisations to be hesitant to engage in these processes remain. Working with HIV and AIDS forces us to reflect on some of the most personal aspects of our lives – on our sexuality, our intimate relationships, our prejudices. As difficult as this is, it remains vitally important to the continued functioning of organisations, particularly in Sub-Saharan Africa, that we continue to work to improve the context in which we deliver our programs. Many organisations have started developing workplace policy for staff affected by HIV and AIDS, driven largely by the demands of the donor community. As this pressure from the donor community has decreased and HIV and AIDS are superseded by more pressing global concerns (like climate change), the need for policy of this nature becomes less apparent and much less of a priority for organisations. This process teaches us a few very important things about the content of policy, but more meaningfully, about the process of
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policy development and, perhaps even more importantly, what role the policy development process can play in strengthening organisations. Policy should be; • structured to suit the individual organisation’s culture, taking into consideration the context in which the organisation works, and be framed by the resources available to implement • culturally appropriate, taking into account existing work practices, the prevailing norms and the relationships that make the organisation work • contextual, taking into consideration the range of laws, support services (internal and external) and existing policies that could support implementation • realistic – it should not commit the organisation to more than it can or could realistically provide or require that the organisation expend significant additional resources to achieve the policy objectives. Perhaps the most important learning to come out of this piece of work is that the process of developing a policy can provide the opportunity to bring an organisation together: for staff to learn and reflect together, to learn about each other, and to share and build relationships with each other. The process of development is an opportunity to do more than respond to a particular issue, it represents an opportunity to build organisations, strengthen relationships and shift the way we go about fulfilling our goals.
Photo: Cedric Nunn/Oxfam
Photo: Matthew Willman/Oxfam
acknowledgements Project Empower would like to acknowledge the contributions of many organisations in KwaZulu-Natal, Limpopo and Eastern Cape, to the development of our understanding of HIV in the workplace. The work was initiated, many years ago by Samantha Willan, then Manager of Health Economics and HIV/AIDS Research Division (HEARD), who contracted us to run workshops for NGOs on the potential impact of HIV on NGO workplaces. Thanks to Oxfam NOVIB who supported us over eighteen months in working with NGOs from KwaZulu-Natal and the Eastern Cape;
and Diakonia Sweden for contracting us to work with their partners. The Oxfam HIV and AIDS Program (OHAP), managed by Oxfam Australia, has been particularly supportive, as evidenced by this booklet. We owe a particular debt to the five organisations whose experiences around policy we share: Operation Upgrade, CHoiCE Trust, HIV and AIDS Prevention Group, KwaZulu Regional Christian Council and Hillcrest AIDS Centre Trust.
useful resources community development resource association (CDRA)
international labour organiSation (ILO)
Community Development Resource Association (CDRA) published Positive Organisation: Living and working with the invisible impact of HIV/Aids – a resource for NGOs De Wet, Heather; Everett, Catherine; Pothier, Siobhain; Soal, Sue. editors. Published by CDRA (2003). “Positive Organisation” was a pioneering text in understanding the impact of HIV on the NGO workplace: http://www.cdra.org.za/Bookshop
The International Labour Organisation (ILO) Code of Practice on HIV and AIDS and the world of work contains key principles and guidelines for policy development and programs in the workplace. The code can be downloaded from: http://www.ilo.org/global/What_we_do/ Publications/lang--en/docName-KD00015/index.htm
University of KwaZulu-Natal (UKZN)
The organisation Stop AIDS NOW has done much useful work. Download at: http://www.stopaidsnow.org/downloads
For a discussion on the need to continue to see HIV as an exception, see the website of Health Economics and HIV and AIDS Research Division (HEARD) of the University of KwaZulu-Natal (UKZN): http://www.head.org.za/news/shoul-aidsstill-be-treated-as-exceptional
Back Cover Photo: Matthew Willman/Oxfam
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STOP AIDS NOW
Photo: Matthew Willman/Oxfam