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Improving Access - Section 2: Good practice in HIV/AIDS-related treatment
   Last updated: 28.06.02
Introduction: safe and effective HIV/AIDS-related treatment
Diagram, not reproduced here, shows the following elements, surrounding “Helping relationships among all those involved”: Effective referral systems, e.g. between NGOs and government clinics; Regular supply of appropriate, good quality and affordable drugs; Availability of basic commodities, e.g. syringes and condoms; Availability of psycho-social services; Provision of basic needs, including food, water and shelter; Appropriate technical, organisational and ‘people’ skills; Supportive policy environment at local, national and global levels; Accessible legislative systems to advocate for change; A social environment [of] non-discrimination and [opposition to] stigma; Multi-sectoral collaborations; Active involvement of PLHA; Accurate, up-to-date and accessible information about treatment; Appropriate and positive attitudes among ‘providers’ and ‘receivers’; Understanding of the assessed needs of communities and organisations; Basic medical infrastructure, including laboratories and pharmacies.

Safe and effective treatment for any kind of disease requires that technical interventions should not be harmful and should be used in ways that achieve the best advantage for the patient – the person who receives treatment. Safe and effective HIV/AIDS-related treatment is a process involving a variety of elements. Ensuring access to safe and effective HIV/AIDS-related treatment is not just a question of one action, one service or one policy. It is not, for example, just about providing drugs. Each element is a vital aspect of good practice around HIV/AIDS-related treatment. However, only when combined together does each element of the ‘jigsaw’ add up to give the complete picture of safe and effective HIV/AIDS-related treatment.

During the assessment and development phase of the Handbook, NGO, CBO and PLHA group participants strongly agreed that ‘helping relationships’ (see Section 2.1) were central to safe and effective treatment. When the importance of these helping relationships is understood, it is possible to identify further what are the knowledge, skills and attitudes that are required for good treatment, and what other elements need to be in place to support them and help them remove the barriers to safe and effective treatment.

There are a number of key points to remember about making treatment effective and safe.

  • Treatment should be defined in the context of care and support


Different people have different understandings about what treatment is, so planning for treatment should include finding out what are the expectations for treatment and what other elements of care and support are required alongside any medical interventions.

Viewpoints

“Care and support are very much related to treatment – helping people to have well being by preventing suffering, disease, discrimination.”

“Social support makes a better environment for the patient to live with HIV, helping families to plan for the future and avoid problems such as selling their house and land to pay for treatment, becoming homeless and destitute as a result.”

“If we say we want to help the patient get a better quality of life, we also have to talk about prevention – of OIs [opportunistic infections], of how HIV/AIDS-related disease can be transmitted, of reducing exposure of others through sex.”

Comments on the relationship between treatment care and support from participants at the workshop on access to HIV/AIDS-related treatment, KHANA and the Alliance, Cambodia, May 2001.

  • Treatment with medicines does not work in isolation


Treatment must be supported by other elements of care and support, and related to the environment in which it is delivered. At the workshop in Cambodia on access to HIV/AIDS-related treatment, hosted by the Alliance and its LO, KHANA, participants drew a diagram (see below) to show that in order for treatment with drugs to be effective it should be combined with and supported by other elements of care and support, such as food and counselling.

Diagram from the workshop in Cambodia

This shows treatment with drugs surrounded by: food; counselling and moral support; education on prevention; religious practices and prayer; traditional remedies.

  • Treatment and prevention are interlinked


Treatment and prevention of TB and HIV/AIDS-related infections are interlinked from a clinical perspective: treatment reduces morbidity and deaths but also reduces exposure of uninfected people to infectious organisms. This is also true in terms of other HIV/AIDS-related conditions. In Cambodia, people with HIV found that their overall well being improved due to the visits from the home care teams supported by KHANA. Their families spent less money on medicines and had to make fewer visits to hospital. In addition, neighbours, friends and family members came to understand more about HIV and to be less afraid of the virus. There was less stigma and discrimination around HIV/AIDS in the community, making it easier to educate on HIV prevention. In some settings, provision of VCT facilities attracted people for testing, but also revealed that if treatment facilities were available, more people were willing to be tested and to return to hear their results.

Again, in prevention of mother-to-child transmission (MTCT), drug treatment is a key measure to prevent the baby acquiring HIV infection. But it requires attention also to the mother’s health and nutrition, to breastfeeding practices and to health and social support for mother and infant after birth.

  • Good referral networks and procedures are required to sustain safe and effective treatment


No single organisation or treatment facility can hope to meet all of the needs of people with HIV. Knowledge, skills and resources are required in many different areas for a quality people with HIV-centered treatment. It is vital, therefore, to form networks with people and organisations who can ensure that safe and effective treatment is accessible to people with HIV. This will involve an assessment of what treatment people with HIV want, what resources and services are already available to them and who is involved in providing and supporting safe and effective HIV/AIDS-related treatment.

The following section takes a closer look at some examples of good practice for safe and effective HIV/AIDS-related treatment.

2.1 Attitudes and behaviours for safe and effective treatment
For safe and effective HIV/AIDS-related treatment, it is vital that people treat themselves and others in a helpful and responsible way. Therefore, the attitudes and behaviours of those both providing and receiving treatment are crucial if treatment is to be safe and effective. Even medicines need a supportive environment in which to work well.

At the heart of these attitudes and behaviours lies the ‘helping relationship’. This aims to respond to the needs of people with HIV seeking treatment and to improve the quality of their lives. It is a two-way process, with both parties being open and co-operative within a dynamic of trust and respect.

The helping relationship does not only occur between doctors and patients. It is also necessary among others involved in treatment, including family members, pharmacists, counsellors, church members and neighbours. At the workshop on involving people with HIV for improving access to HIV/AIDS-related treatment in the Philippines, hosted by the Alliance and its LO, the Philippines HIV/AIDS NGO Support Programme (PHANSuP), participants felt that rather than creating dependency syndromes, helping relationships are about developing interdependency, both between the recipients and providers and also among and between different providers.

The diagram below, drawn by participants during the Philippines workshop, shows the many different types of people that can become involved in helping relationships to improve the quality of life of people with HIV.

Diagram from the workshop in the Philippines

This shows a circle of people around, and linked to each other and to a person with HIV (in the centre). The circle includes: Friends; NGO care-giver; Positive peers; Volunteers; Employer; Lawyers; Nurse; Doctor; Family, brothers, sisters; Co-workers; Social worker; Neighbours; Health educators; Nurse; Health office; HIV/AIDS co-ordinating team researcher; House help and support group; Positive children; Counsellor; Priest and nuns …

Those involved in treatment provision need to have the appropriate:
  • knowledge – understanding and information about new treatments, side-effects of drugs, HIV transmission, nutrition, drug storage, positive living etc.

  • skills – a good balance of technical and ‘people’ skills, such as active listening, counselling, selecting treatment, making referrals, monitoring the effects of drugs etc.

  • attitudes – an approach that is honest and empowering for people with HIV, based upon compassion, tolerance, non-discrimination and common sense.


Of particular note: the attitudes of treatment providers can make a world of difference. For example, a care worker interviewed during the Alliance’s assessment of HIV/AIDS-related treatment in Zambia told of how people receiving the same medicines from a home-based care project and from a hospital were certain that the those provided by the home-based care project worked better because they were accompanied by caring and supportive attitudes.

Action on HIV/AIDS-related treatment needs to be carried out within an ethical approach. Ethics are about a person’s code of behaviour, based upon the principles of doing no harm, minimising risk and empowering people to make their own choices. They are particularly important within the context of HIV/AIDS-related treatment, which can often be a complex and controversial subject.

Where possible, an ethical approach should be developed in a participatory way, involving both providers and recipients of treatment. It is likely to involve attention to areas such as maintaining confidentiality, seeking non-discrimination and ensuring the equitable distribution of benefits as well as of difficult choices. For example, in its own work on improving access to ARVs, the Alliance supports approaches whereby selection criteria for ARV treatment programmes are developed in an inclusive manner, involving people with HIV and community members.

Putting ethics into everyday practice is vital for the effective provision of treatment. However, it is also important for NGOs, CBOs and PLHA groups to know the national legislative context in which their work is based. At the workshop on involving people with HIV for improving access to HIV/AIDS-related treatment in the Philippines, participants were encouraged to learn about their country’s constitution, Bill of Rights and national AIDS law, which outline concepts such as the right to health, equal protection under the law and non-discrimination on the basis of HIV status.

Photo (not shown here): At the workshop in Zambia on access to HIV/AIDS-related treatment, hosted by the Catholic Diocese of Ndola and the Alliance, participants drew a diagram to describe the knowledge, skills and attitudes required by an ‘ideal’ treatment provider.

Example: photo

This photo depicts a role play, based upon the real experiences of people with HIV, which was used at the workshop on access to HIV/AIDS-related treatment hosted in Cambodia by KHANA and the Alliance to discuss the ethical issues around access to HIV/AIDS-related treatment. The participants, representing a home care worker, a person with HIV, a family member and neighbours, role play a situation in which the home care worker spreads news about a person’s HIV status and expresses their dislike of that person by using derogatory language.

Comments from participants after the role play
  • The home care worker does not maintain confidentiality; seems to blame the spouse; is impatient and does not describe how to use the medication.

  • The worker does not listen to the person with HIV and fails to teach the spouse how to care for the patient, so the person with HIV does not trust the worker and feels oppressed.

  • The person with HIV needs encouragement and support to understand the medicine they are being given and to keep taking it

  • If the worker is afraid of HIV/AIDS, other people, including the family, will behave in the same way; for example, they will not want to touch the patient.


Viewpoints

"Helping relationships and treatment take teamwork!" Participant at the Catholic Diocese of Ndola and Alliance workshop on improving access to HIV/AIDS-related treatment, Zambia.

"Giving treatment is about the person receiving the treatment. You should know the treatment and know the person if you want the treatment to be effective." Cedric Fernandes, Michael’s Care Home, India.

"This network of helping relationships identifies resources and helps to solve the problems." Participant at the Catholic Diocese of Ndola and Alliance workshop on improving access to HIV/AIDS-related treatment, Zambia.

2.2 Treatment information
Good treatment information is essential for ensuring safe and effective HIV/AIDS-related treatment. If the information needs of patients, health workers, and carers are satisfied, they can co-operate with each other to ensure that appropriate treatments are made accessible and used to the best advantage of the patient. Without the right information for all concerned, there is risk of inappropriate treatment, treatment failure or no treatment at all. Experience with Alliance partners during the development of the Handbook showed awareness among NGOs, CBOs and PLHA groups that treatment information should cover a range of other questions alongside the medical ones.

Good treatment information includes a variety of elements. It is not just a question of ensuring that medical workers have treatment guidelines or prescribing and safety information about drugs, although these are essential. People with HIV will not seek treatment if they do not know that it is available – people with HIV, their carers and the medical workers need to be aware of available services before they can seek access or try to improve access to treatment. Prescribers can only prescribe in a useful way if they know what possible treatments can be chosen for patients.

The treatment information sheet below is an example of what good treatment information should include.

Treatment Information Sheet
Basic information
What is the treatment called? (may have more than one name…)
How does the treatment help people living with HIV/AIDS?
Using the treatment
What form does the treatment take and how is it used? (e.g. lotion to rub on skin, tablets to swallow…)
How much of the treatment should you use at a time? (e.g. two tablets, a teaspoon of syrup…)
How often should you use the treatment? (e.g. whenever you feel the need, twice a day…)
How long should you use the treatment for? (e.g. for one week, until the problem gets better, the rest of your life…)
Do you need to do anything else to go with the treatment? (e.g. drink lots of water, avoid eating when taking the treatment, eat special food…)
Effects of the treatment
Can the treatment have harmful effects? If so, what are they?
What should you do if you suffer harmful effects from the treatment?
What do people who have used the treatment say about it – good and bad?
Obtaining the treatment
Where can you get the treatment?
How much does it cost in cash or goods?
Are there any extra costs for using the treatment? (e.g. fees to the health care provider, buying other supplies such as dressings…)
What will the total costs be for a complete course of the treatment or (for long-term treatment) per month or week?
What is the total when the cost of the treatment is added to any extra costs?
Is there any other information you should know about the treatment?

Concordance – the willingness and informed co-operation between all involved in treatment – depends on each person knowing enough about what a treatment is, how it is likely to help, how it is used and what effects to expect from it (good and bad). They need to know how the treatment fits in with daily living, such as timing of drug doses or availability of food. They also need to know how to get the treatment and from where, whether supplies will be sufficient, what it costs, and what else is involved, such as transport, referrals and follow-up visits, or supplies, such as drugs, monitoring tests and dressings.

At the workshop on access to HIV/AIDS-related treatment hosted by India HIV/AIDS Alliance in February 2001, participants developed the following checklist of information that prescribers and patients need about ARV treatment.
  • cost of drugs

  • cost of laboratory tests for monitoring

  • ARV therapy is life-long

  • ARV is not a cure for HIV

  • ARV can mean taking many pills - drug combinations are necessary

  • how to take the drugs - with or without food, dietary requirements

  • side-effects and what to do about them

  • possible interactions with other drugs - TB drugs

  • possibilities of resistance - may mean changing combinations of drugs


People already have some knowledge about illnesses and related treatments, but this information may not be entirely accurate. Treatment information is already ‘resident’ in many NGOs, CBOs and PLHA groups – members have acquired knowledge from their own and other people’s experiences of illness and treatment. Also, their concern with the epidemic makes them receptive to information from the media, from outside sources and from medical workers who are part of their group or who provide advice to them. However, the information they have may be patchy or inaccurate. Knowledge gaps need to be filled, myths dispelled and accurate information clearly understood to ensure effective involvement in improving access to, and use of, treatment.

At the workshop in Zambia on access to HIV/AIDS-related treatment, hosted by the Catholic Diocese of Ndola and the Alliance, participants from NGOs, CBOs and PLHA groups drew a lifeline identifying the different illnesses that a person with HIV/AIDS may experience and the treatments the participants knew for those illnesses. The lifeline showed that there is some knowledge about common illnesses and treatments, but it also helped to reveal the gaps. For example, not all treatments were named, some of those named are not effective and there was confusion between drug trade and generic names. Participants also discussed how there are many times in the life of a person with HIV/AIDS when there is no illness present, but preventive treatment would still be needed.

Example of lifeline from the workshop in Zambia

Diagram, not shown, has a line from HIV+ diagnosis to death with a range of conditions and in some cases (fevers, genital sores, diarrhoea, skin infections, chronic diarrhoea) a list of treatments too.

2.3 Treatment for specific populations
Each person with HIV/AIDS leads a unique life, with a unique set of influences, needs and resources. Where possible, the provision of HIV/AIDS-related treatment needs to take this into account in terms of responding to the individuality of those factors and being appropriate to the person in question.

‘One size does not fit all.’ Indeed, ensuring that services are not only available but also appropriate is particularly important for groups that have unique needs as a result of being marginalised from society because of their gender, behaviour, profession or status. Members of such groups may experience further barriers to accessing treatment on top of those already experienced by people with HIV. For example, the Alliance’s assessment of HIV/AIDS-related treatment in India found that women complained of routinely coming second to their husbands in terms of access to care and treatment. Meanwhile, the Horizons diagnostic study on the involvement of people with HIV in Ecuador found that homosexual and bisexual men were deterred from accessing treatment due to discriminatory medical care. In the Ukraine, where the majority of HIV infections are among injecting drug users, these are largely excluded from access to ARVs because they are seen as unable to adhere to a complex regime of treatment.

When working with specific populations it is particularly vital that treatment work is based upon a helping relationship. It is also important that treatment services are developed to respond to the actual needs of those they are meant to support. For example, injecting drug users may need specific advice about how HIV/AIDSrelated treatments might interact with other drugs that they use. Furthermore, in many cases it is necessary not to only respond to the expressed needs of the population in question but also to address issues of discrimination among treatment providers, the broader community and the people with HIV themselves. Even with the best of intentions, providing HIV/AIDS-related care and treatment for specific populations in a way that identifies them as members of a specific population is not always appropriate and can involve challenges, particularly in terms of potentially increasing their stigma and isolation. As with any treatment work, the approach needs to be holistic – responding to the person as a whole rather than as simply a medical diagnosis.

The Alliance and its partners are increasingly involved in treatment issues that affect children, both those affected by and those living with HIV. Children whose parents are HIV positive are often affected by the parents’ needs for treatment, which can impact upon family priorities and expenditure. For example, An Evaluation of the MoH/NGO Home Care Programme for People with HIV/AIDS in Cambodia found that in 40 per cent of supported families, the children had had to go without such things as food and books since the carer became sick, partly due to increased spending on medicines. In addition, children may find themselves as the primary carer of a family member, and therefore be responsible for delivering treatment on a daily basis. This raises both ethical and practical questions, such as how much responsibility should be given to children in terms of administering drugs and how treatment information should be conveyed to them.

Children who are themselves living with HIV also have specific needs and challenges with regard to treatment. At the workshop on access to HIV/AIDS-related treatment in India, participants highlighted the fact that the size and dosage of drugs means that treatment is often not appropriate for children, and that services tend not to be ‘child friendly’. The participants also shared that some organisations refuse to treat children who do not have parents or guardians.

Case study: Project CHILD, Committed Communities Development Trust (CCDT), India (Project CHILD participated in the Horizons diagnostic study on the involvement of people with HIV/AIDS in community-based prevention, care and support services)

Project CHILD of the Committed Communities Development Trust (CCDT) in Mumbai, India, works with children affected by and living with HIV/AIDS, including through a drop-in centre and a temporary shelter for six to eight year olds. As well as providing some basic treatment directly, it facilitates referrals for the children to the services of the local municipal health care system. Where necessary, it gives them financial support – either in full or on the basis of cost sharing – for the drugs for OIs.

Project CHILD’s lessons include that HIV/AIDS-related treatment for children must, where possible, be planned with their family, and that decisions about how much support to give, including how many medicines, must be based upon assessing each individual case. They have also learned that it is vital not only to provide treatment to children but also to help them to cope with their illness, build life skills and access vocational guidance.

Viewpoints

“The ARV landscape in developing countries is evolving quickly. People with HIV are finding and using various routes to access – from buying drugs through the private and often unregulated sector to participation in trials, drug donation and recycling programmes. The lack of regulation, information and expertise is leading in many countries to problems with quality control and adherence, not to mention great inequity of access.”

“The poorest people with HIV, including women and children and people from stigmatised groups, are least likely to gain access through any of the above routes. There is, therefore, a need to act fast to address this, both to prevent (further) drug resistance from building up and to improve equity of access.”

Participants at the Alliance workshop on improving access to ARVs, United Kingdom

2.4 Working with others
No one person, organisation or sector can ensure effective action on HIV/AIDS on their own. Partnership is crucial, as it helps to ensure that efforts are complementary and mutually reinforcing. It also helps to ensure that the different resources of all those involved are put to best use.

Partnership is particularly important for HIV/AIDS-related treatment work because providing it effectively requires a diverse range of perspectives, inputs and skills. It can help to ensure both that more and better quality treatment is available and accessible to people with HIV, and also that efforts fit within existing health care systems, linking to a range of HIV/AIDS services such as VCT, TB, sexually transmitted infection (STI) and HIV prevention. For example, while a clinic may be able to provide equipment and drugs, the delivery of treatment may depend upon a CBO to mobilise community members to use the services.

Partnerships can be developed among a broad range of players, ranging from PLHA groups, rural communities and church groups to pharmaceutical companies and donors to the media. For example, the Maharashtra Network of Positive People (MNP+) in India collaborates with the local government. This involves MNP+ providing teams of volunteers and counsellors who visit three to four government hospitals twice a week, provide support to people with HIV and raise awareness among health care workers.

Meanwhile, the Alliance LO in Senegal, Alliance Nationale Contre le SIDA (ANCS), has helped to develop multi-sectoral cellules in five locations. These are run on a voluntary basis and managed by a committee of local people, including people with HIV, health professionals and social workers. They work closely with a network of health providers and community groups, including hospitals and community pharmacies, in order to provide people with HIV with as full a range of services as possible. In terms of treatment, while some cellules facilitate access to subsidised drugs from pharmacies or hospitals, others develop comités de santé – a type of local insurance scheme – whereby they buy generic drugs from the government’s essential drugs list (EDL) and re-sell them to community members at a reduced, subsidised cost.

In particular, partnerships can help organisations to be responsive in terms of adapting to the changing treatment environment and making the most of emerging opportunities. However, they can also be very challenging, at times involving compromise and a great deal of commitment on both sides. Therefore, it is important that NGOs, CBOs and PLHA groups select their partners carefully, assessing the context in which they work and weighing up the pros and cons for their organisation and community. They also need to ensure that activities are planned in a participatory way, involving all relevant stakeholders and culminating in a formal agreement about what each party expects from one another and what they will each provide.

Partnerships for access to HIV/AIDS-related treatment

At the workshop on involving people with HIV for improving access to HIV/AIDS-related treatment in the Philippines, participants identified the following organisations and sectors as key partners for ensuring better quality treatment.

Diagram shows, in the centre, “Organisations wanting to work on improving access to HIV/AIDS-related treatment” with, around it: HIV/AIDS co-ordinating teams; Philippines National AIDS Council; Local hospitals, doctors and pharmacies; Pharmaceutical companies; Donors; Laboratories; NGOs; International organisations, e.g. UNAIDS and WHO; Support groups, PLHA, families and care givers.

Participants identified different partnerships that they could develop to involve people with HIV in improving access to treatment at different levels. This includes partnerships with treatment providers, peer support groups, NGOs, hospitals, religious organisations, local and national government departments, international donors, NGOs and networks of people with HIV, UN organisations, pharmaceutical companies, other businesses, and academic institutions. All of these partnerships working together can increase the involvement of people with HIV and improve access to HIV/AIDS-related treatment.

Case study: home care programme, Cambodia (programme supported by KHANA)

Cambodia has the highest prevalence of HIV in Asia, at an estimated 2.8 per cent. Since 1999, the Alliance LO in Cambodia, KHANA, has supported a home care programme. The programme now works in three provinces – Phnom Penh, Battambang and Siem Reap – and involves teams of three full-time NGO staff and two half-time government staff from the Ministry of Health. The teams are based in government health centres and work in local communities, providing services including clinical management, nursing and health education, counselling and social support. Each team has a recommended caseload of 80 patients and visits each one an average of three times per month.

In 2000, an evaluation of the programme found that the strong government–NGO partnership was central to the success of the project in terms of keeping costs down and maximising the comparative advantages of each player. It also found that people with HIV felt that the provision of medicines was one of the most important services provided by the teams, with 72 per cent reporting improvements in their well being and physical health. For example, a 30-year-old pregnant woman in Tonle Bassac said, "I was very weak when I found out that I had AIDS. I also became very depressed. The home care team gave me medicines and provided counselling. I now feel the same as other people."

2.5 Integration of HIV/AIDS and TB services
Globally, levels of HIV and TB co-infection are high and continue to increase rapidly. UNAIDS and World Health Organization (WHO) data indicate that one third of all people with HIV have TB co-infection, and similarly that up to 70 per cent of TB cases are HIV positive. Globally, TB is the leading cause of death among people with HIV, indicating that TB detection and treatment may not be happening early enough. Preventing and treating TB can significantly improve the quality of life of people with HIV. Early detection and treatment of TB in people with HIV would lead to reduced morbidity and mortality, and would help control the spread of TB. In a regional consultation on exploring linkages between HIV/AIDS and TB services, hosted by the Alliance, participants from NGOs, CBOs and PLHA groups in Cambodia, India and Thailand identified barriers to early detection and treatment of TB in people with HIV as:
  • lack of information among people in the community, leading to misunderstanding and confusion at community level about HIV/AIDS and TB

  • stigma and discrimination that surrounds both HIV/AIDS and TB

  • lack of access to affordable TB screening and treatment

  • poor referral and follow-up systems


It seems that HIV/AIDS and TB services exist in parallel, and while both are struggling to address the needs of people with HIV, the TB epidemic continues to spread aggressively. If access to HIV/AIDS-related treatment is to be improved, clearly there is a need to exploit the synergies between HIV/AIDS and TB by integrating HIV/AIDS and TB services more effectively.

There are many examples of good practice of how NGOs are integrating HIV/AIDS and TB services. For example, the Alliance’s LO in Cambodia, KHANA, has supported collaboration between the home care teams providing care and support to people with HIV and TB directly observed treatment schedule (DOTS) teams in Phnom Penh. Practically, this has meant that the home care teams provide education on TB to people with HIV and their families. The home care teams also collaborate with the National Centre for Tuberculosis and Leprosy Control (CENAT) to refer people with HIV for TB screening and treatment. However, home care teams report that one of the main reasons why people default on their TB treatment is because they cannot afford the cost of the treatment diagnostic and follow-up tests.

VCT also offers an important entry point for integrating HIV/AIDS and TB services. Kara Counselling and Training Trust (KCTT) (a Zambian NGO that participated in the Horizons diagnostic study), with support from WHO and UNAIDS, ran a pilot of the ProTEST initiative whereby VCT was used as an entry point for HIV/AIDS and TB prevention and care services. The ProTEST initiative’s HIV/TB package provided community involvement, VCT, prevention and treatment of STIs and OIs. The aim of the ProTEST initiative was to increase access to VCT and improve HIV/AIDS and TB prevention and care.

Case study: Christian AIDS Ministry (a Thai NGO that participated in the consultation workshop ‘Exploring the Linkages between HIV/AIDS and TB for Service Delivery’, Cambodia, 2001)

The Christian AIDS Ministry began its work with people with HIV in 1993 and focuses mainly on pastoral care, including general care and support for families. The Christian AIDS Ministry carries out its work through clinics, home visits and community work.

Christian AIDS Ministry also provide care and support for people with HIV with OIs such as TB. TB patients and their families are visited in their homes by home care workers and are informed and educated about TB symptoms, prevention and treatment. This has helped to reduce the stigma attached to the disease. However, what has been found is that a number of HIV patients are resistant to TB drugs and the hospitals do not have the resources to fund the administration of further treatment.

Case study: SAHARA (implementing NGO in care and support programme supported by MAMTA, Alliance lead partner in Delhi)

India has the highest global burden of TB and approximately four million people with HIV. SAHARA is an NGO providing care and support to the people with HIV living in a poor, urban area (population 100,000) in northern India. SAHARA provides a range of services, which include VCT, treatment for OIs, counselling, nursing care, community outreach and income generation support.

SAHARA’s HIV/AIDS-TB programme is jointly supported by the Government of India’s National AIDS Control Organisation (NACO) and their TB Control Programme (RNTCP). With support from NACO and RNTCP, SAHARA now has an in-house TB clinic staffed by a doctor, nurse and counsellor. Materials (including regular supplies of drugs) and training support for the TB clinic are provided by NACO and RNTCP. Additionally, the partnership with government helps to ensure efficient and timely diagnosis and referral to specialist services such as the TB hospital. Community outreach is used to increase awareness in the community about HIV/AIDS and TB. Currently, patients undergoing treatment for TB come to the clinic to be observed taking their TB drugs. However, as the caseload increases, community monitors will be trained to observe patients taking their treatment in their own homes.

Viewpoint

"Advocating for free TB diagnosis and treatment for people with HIV and TB prophylaxis for people with HIV is a priority." Dr. Tith Khimuy, Programme Manager, KHANA, Cambodia

2.6 Involving people with HIV to improve access to HIV/AIDSrelated treatment
People with HIV are not just the passive ‘recipients’ of treatment. They can also be participants, providers, educators, managers, planners, evaluators and advocates.

The involvement of people with HIV as individuals or as members of support groups has become an important principle in the work of the Alliance and its partners, and was the subject of the Horizons diagnostic study on the involvement of people with HIV in the delivery of community-based prevention, care and support services in Burkina Faso, Ecuador, India and Zambia. In Ecuador, for example, the study found that people with HIV gained many tangible benefits from involvement in NGOs and CBOs, including more and better access to medicines due to increased contacts and access to up-to-date information. In Zambia, the study found that at the Salvation Army’s Chikankata Health Services, involvement in the care and prevention teams (CPTs) had helped people with HIV to identify infections at an early stage and seek medical attention as soon as they became sick. For example, an HIV-positive member of a CPT said: “My health has really improved because I have now learnt how to look after myself properly. I used to be sickly, I was in and out of hospital...but now my health has really improved...I know how to prevent some of these opportunistic diseases.”

The Alliance has also learned that the benefits of the involvement of people with HIV go beyond those directly related to individuals. Indeed, people with HIV have much to ‘give’ to the development of treatment services, especially in terms of ensuring that they are relevant, credible and people with HIV-friendly. For example, the involvement of some 120 people with HIV in the evaluation of the Ministry of Health/NGO Home Care Programme in Cambodia proved invaluable, helping to identify the strengths of the initiative and relevant next steps, such as building partnerships with TB services and expanding the use of community volunteers.

The Alliance has also seen that people with HIV have a crucial role to play as service providers and advocates, as they can combine technical knowledge with their unique, first-hand experiences; for example, of side effects and drug adherence. With REVS+ in Burkina Faso (see p.31) and the multi-sectoral cellules in Senegal (see p.24), people with HIV are involved in a broad range of capacities, from ‘hands on’ prevention and care services to increasing the ‘treatment literacy’ of those involved, including health care professionals.

The experiences of such groups have taught the Alliance that it is vital for people with HIV to be involved in all aspects of the design, implementation and evaluation of programmes to improve access to HIV/AIDS-related treatment. It has also shown that people with HIV need to be supported to find a ‘pathway to involvement’ that suits their individual interests, needs and skills. While some may wish to focus upon a pathway as an individual, others may chose to be involved by becoming a member of a self-help group or a CBO or NGO. Equally, it is important for NGOs and CBOs to follow a pathway to involvement to understand how to involve people with HIV and how best to support this process.

Pathways to people with HIV involvement

At the workshop on involving people with HIV in improving access to HIV/AIDS-related treatment, participants explored the potential roles of people with HIV in HIV/AIDS-related treatment work in the Philippines. They started by drawing a chart showing some of the kind of roles that people with HIV might play and the advantages and disadvantages of each kind of involvement, as shown by the following example.

Counselling or information, education and communication about treatment

Advantages:
  • PLHA have first-hand experience

  • They can be positive role models


Disadvantages:
  • PLHA might get too personally involved

  • If not trained adequately, can result in wrong information being passed on


Giving palliative care

Advantages
  • PLHA can provide more empathetic treatment because they can relate to the issues


Disadvantages
  • Can result in dependency on the PLHA

  • PLHA can burn out due to excessive workload or due to a ‘mirror effect’, whereby an asymptomatic carer can over-identify with the already symptomatic patient


Doing advocacy, including with medical staff

Advantages
  • PLHA can speak from personal experience and with degree of authority, which can have a positive impact

  • Their involvement provides an opportunity for dialogue to understand perspectives from both sides


Disadvantages (same as for palliative care)

Following that, the participants discussed the steps necessary for individual people with HIV to take to become involved in improving access to HIV/AIDSrelated treatment, as well as the steps for NGOs and CBOs to take to involve people with HIV in their work.

Photo (not shown here): Participants in the workshop on involving people with HIV in access to HIV/AIDS-related treatment exploring pathways to involvement.

The following ‘pathway’ for NGOs and CBOs to involve people with HIV in improving access to HIV/AIDS-related treatment has been adapted from the results of this exercise and also incorporates some of the learning from the Horizons/Alliance diagnostic study on the involvement of people with HIV/AIDS in community-based prevention, care and support services.

An example of a pathway to involving PLHA in CBO’s/NGO’s work on treatment

Agree on value added by PLHA involvement and sensitise management and staff

Identify possible areas for PLHA involvement in improving access to HIV/AIDS-related treatment and develop policies for this involvement

Allocate budget for remuneration of PLHA; including medical benefits

Inform PLHA about possibilities for being involved in activities and/or recruit PLHA as paid employees - or as unpaid volunteers with clearly defined roles and some form of financial compensation

Monitor and evaluate

Extend nondiscriminatory employment policies to management and decision-making positions

Mobilise PLHA by supporting the formation of networks and support groups and provide any necessary training

Do a needs assessment of skills and training needs of PLHA; provide up-to-date and accurate information on HIV/AIDS and treatment issues; allocate training budget and provide training on e.g. treatment delivery, design and planning, management

The Alliance and its partners have also seen that involvement must be carried out in a planned, sensitive and responsible manner. Involvement must not expose people with HIV to further stigma and breaches of confidentiality or create dependency, either of people with HIV on NGOs and CBOs or of medical staff on PLHA support groups. It is also crucial that an ethical approach is maintained throughout; for example, in terms of ensuring that people with HIV are treated both respectfully and supportively. For instance, the Copperbelt Health Education Project (CHEP) in Zambia has learned that if people with HIV are to carry out their vital work – including raising the profile of people with HIV in the organisation and serving as a role model for community members – they need to be offered a package of support. In practice, this includes medical insurance and treatment costs, alongside a salary, transport and training.

Indeed, the Horizons diagnostic study in Zambia concluded that: “NGOs should make sure that people with HIV involved in their activities can be treated at least for opportunistic infections, otherwise their involvement cannot be sustainable.”

Meanwhile, a key conclusion of the study in Burkina Faso was that access to treatment, particularly ARVs, was a major motivation for people with HIV to become involved in NGOs and CBOs. Another conclusion was that NGOs and CBOs need to prepare themselves for their potential role in providing or facilitating ARVs; a process which should involve people with HIV in developing criteria for the selection of beneficiaries. However, CBOs, NGOs and PLHA groups will need to plan so that they can cope effectively with increased demand on their services. As a member of REVS+ put it: “I can assure you that once REVS+ has tritherapy [ARVs]...it will be packed with people here, people will be queuing up.”

Case study: REVS+, Burkina Faso (one of the organisations supported by IPC and a partner in the Horizons diagnostic study on the involvement of people with HIV)

Responsabilité, Espoir, Vie et Solidarité + (REVS+) is based in Bobo-Dioulasso and supported by IPC, the Alliance LO in Burkina Faso. It serves over 150 adults and 80 OVCs [children], with 40 per cent of its members being people with HIV.

REVS+ mobilises people with HIV to volunteer for a broad range of HIV/AIDS activities, including treatment work, testing and social support. They do not receive payment, but work on the basis of the NGO’s slogan of ‘support and be supported’, with REVS+ offering them support such as medication to treat OIs, either in the hospital or at their office.

REVS+ has encouraged people with HIV to become actively involved in selecting and managing their own treatment, which in turn has helped to increase acceptance and understanding about treatment among medical professionals, the public and community leaders. The organisation has also become a local and national leader in HIV/AIDS advocacy. For example, it has lobbied the authorities and local health structures to apply the government decree that public sector care should be free for people with certain illnesses, including HIV infection. Bobo-Dioulasso is currently the only place in the country where the decree is applied.

The future challenges of the organisation include the high costs of medical supplies for OIs and the increasing demands from community members for ARVs. As members put it:

"People say that REVS+ is a CBO of people with HIV and so we must have medicines. When they realise that we ourselves never get to see these products, they back down."

"Antiretroviral therapy: we see them, we feel them, but we cannot touch them."

Photo: Members of REVS+ during an HIV/AIDS-awarenessraising campaign.

2.7 Involving communities
Mobilising and involving communities lies at the heart of the work of the Alliance and its partners to support community action on HIV/AIDS in developing countries. Involving local people and leaders is crucial to improving access to HIV/AIDSrelated treatment. This is because it helps to address issues of stigma and discrimination, to ensure that responses are appropriate and that scarce resources are put to best use. For example, community members can help to ensure that efforts complement local cultural and health-seeking practices, and that NGOs, CBOs and PLHA groups are not duplicating services that are already available.

Communities can be involved in HIV/AIDS-related treatment work in a number of different ways. They can, for example, participate in community assessments to identify local needs and resources, and regular monitoring meetings to assess progress. They can also provide vital support to the running of NGOs, CBOs and PLHA groups; for example, with community members participating in management committees or contributing resources such as venues and equipment.

Community members have a particularly vital role to play as home-based carers for people with HIV and volunteers with NGOs and CBOs. For example, the Salvation Army in Mumbai, India, includes volunteers in its community-based teams that work in 11 locations throughout the city, providing support to people with HIV and referring them to local clinics for treatment. Meanwhile, each of the home care teams of the Ministry of Health/NGO Programme in Cambodia involves five community volunteers, including village leaders, students and professionals. They are recruited from the community in which they live and provide a major source of referrals of new patients, as well as facilitating links with community activities. The evaluation of the programme concluded that the work done by the community volunteers – which involves providing ongoing psycho-social support to people with HIV and their families – enables the medical professionals in the teams to focus on providing treatment. It also found that the volunteers had good relationships with traditional healers and were able to break down the mutual mistrust between traditional and orthodox medical practitioners.

Above all, the Alliance has learned that it is important to involve communities in a way that is genuine and respectful, rather than tokenistic or intrusive. In practice, this involves respecting local traditions and ways of working, while also sharing new methodologies and information; for example, about advances in available treatments.

Case study: Seva Nilayam, India (an implementing NGO in the care and support programme supported by PWDS, Alliance lead partner in Tamil Nadu)

Seva Nilayam is a community health and development organisation in Tamil Nadu that provides high quality and low cost health services for TB, HIV/AIDS and community health care. Throughout its work, it has emphasised involving the local community, including through supporting self-help groups for poor women. By involving more people, expanding its services and reducing its costs, it has experienced an increase in its success rate for treating patients.

Seva Nilayam’s lessons include that mutual trust is essential for involving the community; that previously treated patients can be effective DOTS providers; and that immediate attention to drug compliance can reduce defaulters. They have also learned that it is vital to maintain confidentiality in all aspects of their treatment work with the community, and that it is equally vital to provide continuous education and follow-up for home care providers, including about issues relating to drugs.

With the rapidly changing political and economic climate around the provision of ARVs in resource-poor settings, ‘community preparedness’ for ARVs is essential. This involves an ongoing process of understanding community beliefs and needs around the drugs, facilitating community dialogue, carrying out consumer education on HIV/AIDS-related treatment and monitoring and evaluation. Central to ‘community preparedness’ is the involvement of members of the community, including people with HIV. It will also involve fostering active collaboration among diverse local stakeholders, including those outside of the health sector, and maximising the potential role of NGOs, CBOs, PLHA groups and the church in building relevant community-level knowledge, understanding and skills.

Viewpoints

"It is important to have an understanding about community norms, values and beliefs about ARV treatment if an ARV treatment programme is to be successful. There is also an immediate need for communities to have information about ARV treatment that is easy to understand, objective and accurate. There needs to be community dialogue about ARVs so that a clear understanding of the issues can be developed. Communities should also have a role in the monitoring and evaluation of an ARV treatment programme. Community preparedness will contribute to increasing understanding of adherence issues. It can also be a way of understanding what the community can contribute towards an ARV treatment programme." International HIV/AIDS Alliance, Technical Guidance Note (draft) Access to Anti-Retrovirals, Zambia, April 2002

2.8 Assessment, decision-making and keeping track of work
A participatory process that can assist NGOs, CBOs and PLHA groups to assess, prioritise and make decisions about what they should do about improving access to HIV/AIDS-related treatment.
Diagram shows step 1, Assessing needs and resources, including: A. of PLHA and the community, B. of the local environment, C. of your NGO/CBO; step 2, Prioritising needs and resources; step 3, Deciding what to do.

Reference: Mobilising NGOs, CBOs and PLHA Groups for Improving Access to HIV/AIDS-Related Treatment – A Handbook of Information, Tools and other Resources.

Photo of drawing (not shown here): An example from Zambia showing the availability of TB treatment in an urban area.

Responses to HIV/AIDS are most effective when based upon an assessment of the needs and resources of those involved. Ensuring access to safe and effective HIV/AIDS-related treatment is no exception.

Assessments provide an opportunity for organisations to mobilise their local community and find out about local needs and resources. They can help organisations to gain a realistic understanding of the context of their work and to go on to make good, strategic decisions about the best way forward. It is vital that those who are directly in need of services, particularly people with HIV, are active participants rather than the ‘objects’ of assessments on HIV/AIDS-related treatment. It is also important that assessments are carried out regularly, so that organisations can identify and respond to changing needs and circumstances.

Assessment of treatment needs and resources of people with HIV and the community should include people with HIV, families, carers, traditional healers, spiritual leaders and community leaders, and can look at issues such as the needs of people with HIV, where people get treatment and how people with HIV use treatment. Groups can use a community mapping tool to identify the variety of locations in their local area where people can access different types of treatments. For example, in Zambia, during the workshop on access to HIV/AIDS-related treatment, participants mapped out the availability of TB treatment in an urban area.

Assessment of needs and resources in the local environment should include other NGOs, government, donors and doctors, and can look at issues such as who is involved in HIV/AIDS-related treatment, what services other organisations provide and how effective their work is. Groups can use a universe map to identify the other organisations involved in treatment work and their relationships with each other. For example, in India, during the workshop on access to HIV/AIDS-related treatment, participants drew a map to show the key players in treatment work for HIV-positive women in a slum area.

Map from the workshop in India

[shows, not reproduced, here: Doctors, nurses, other care providers; Donor; Charitable trusts; NGO; Individuals; Other NGOs; Government; Chemists; Pharmaceutical companies]

Assessment of an NGO, CBO, or PLHA group should involve the organisation’s staff, volunteers, people with HIV, trustees and management committee, and can look at issues such as how treatment fits with the group’s mission, what resources it has and how current programmes might support future work on treatment. Groups can use a strengths and weaknesses chart to identify their relevant skills and resources. For example, in Cambodia, during the workshop on access to HIV/AIDSrelated treatment, participants drew up this chart to summarise the combined strengths and weaknesses of all of their NGOs and CBOs.

Strengths
  • Capacity to provide counselling and care

  • Good relationships among staff, patients, families and hospital

  • Can identify people in need

  • Have some money for the work

  • Are able to give drugs directly to people

  • Have the support and participation of other institutions and the community

  • Have co-operation with health centres

  • Are able to educate people about HIV/AIDS prevention

  • Have good motivation


Weaknesses
  • Are not able to provide treatment to many patients

  • There is stigma and discrimination in the community

  • Don’t have enough or good quality drugs

  • Don’t have enough time to visit the patient

  • Uses up a lot of resources

  • Staff don’t know how to use drugs

  • Have no skills in management of drugs and providing treatment

  • Can only provide treatment for symptoms


Having carried out an assessment, it is vital that an organisation thinks carefully and strategically about what treatment work it can and wants to carry out. This process involves weighing up everything that it knows about the different levels of need, identifying gaps and priorities, and developing a realistic plan of action. The organisation can base this process upon the types of strategic planning and project cycle that it is used to, ensuring that any new areas of work are carefully integrated into its overall vision and work plan. This is a vital part of the process of finding a balance with other areas of the organisation’s work, as well as the most natural and effective ‘entry point’ for treatment work; for example, through VCT, PLHA groups or home-based care.

There are some specific issues to consider when planning HIV/AIDS-related treatment work. For example, considering the risks of short courses of certain treatments, the Alliance encourages partners to commit to providing access to treatment for at least a minimum period, while seeing sustainable life-long access to ARVs as an additional, long-term goal. It is also important for organisations to address internal issues about HIV/AIDS-related treatment. For example, the Alliance has developed its own HIV/AIDS in the workplace and medical benefits policies, and is supporting its LOs in Cambodia and Senegal to develop HIV/AIDS in the workplace and medical benefits policies for their own staff. The policies will contribute to creating a favourable and non-discriminatory workplace environment and help to compensate for existing discriminatory practices of the private health insurance sector. This approach combines ensuring access to treatment with addressing the social dimension of HIV/AIDS, including the broader questions of stigma and discrimination.

Once an organisation has decided what type of work to do, it needs to inform others and to plug into relevant networks in order to exchange lessons and work towards a complementary approach. Once it has started its work, the organisation also needs to monitor its efforts, assessing its results and achievements against realistic indicators. It also needs to review its efforts on a regular basis in order to respond to the rapidly changing treatment landscape and avoid internal crises, such as the ‘burn out’ of frontline workers.

In the course of time, the organisation might need to plan how to scale up its work to respond to a growing epidemic and increased demands for its services. For example, Asociación de Salud Integral – an organisation that shared its experiences at an Alliance/Horizons seminar on scaling up action on HIV/AIDS – initially planned for an average 15 per cent increase in counselling and treatment patients in their hospital clinic in Guatemala City. In practice, this was the case for the first two years, but in 2000 there was an increase of over 100 per cent due to both the growing epidemic and greater awareness of their work. Therefore, they had to adjust their plans and services accordingly.

Viewpoints

"The point is not to duplicate what is already being done but to fill the gaps. We need also to look at the possibility that if we start to do something, others might relinquish their responsibility. That is not what we are aiming for." Participant at Catholic Diocese of Ndola and Alliance workshop on access to HIV/AIDS-related treatment, Zambia.

"It is important to set priorities. NGOs working in treatment and care should not feel compelled to respond to every need." Krupa Shinde, India HIV/AIDS Alliance.

Source: Improving access to HIV/AIDS-related treatment
This is an extract from Improving access to HIV/AIDS-related treatment, a report published by the International HIV/AIDS Alliance in June 2002.

To view the whole report follow this link.

To download the full report, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size 725kb).