Benefits

A diagnostic study conducted by the Alliance and the Horizons Project in Burkina Faso, Ecuador, India and Zambia revealed that involving PLWHA in treatment can offer many benefits, not only related to the improvement of health and social services, but also for other PLWHA and themselves.²

Improvement of services – PLWHA can improve treatment services by ensuring that they are relevant, credible and friendly. For example, the involvement of some 120 PLWHA 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. PLWHA can also be involved in education and training of health-care workers. Besides, they are well placed to add authenticity to advocacy work as their personal experience lends credibility to advocacy.

Positive role models – PLWHA can be positive role models. The role of "patient-teachers" can be further explored. For example, stories of personal experiences help to reduce the stigma surrounding HIV/AIDS and treatment. Many of the respondents who were on ARV treatment in the Community Consultation on ARV Treatment in Zambia (see also Country Watch) reported that they had been inspired to start treatment by listening to the testimonies of others who were using ARVs successfully. However, stories about people having difficulties in managing side-effects of ARV treatment also prevented other people living with HIV/AIDS from accessing treatment. PLWHA can combine technical knowledge with their unique first-hand experience, for example of managing side-effects and adhering to treatment, to support other PLWHA in their treatment.

Personal benefits – PLWHA who are involved in treatment can benefit from improved information, including on how to access treatment. For example, in Ecuador the Horizons Project found that people living with HIV/AIDS gained many tangible benefits from involvement in treatment services, including more and better access to medicines due to increased contacts and access to up-to-date information. They also enjoy improvements in their physical health. For example, in Zambia at the Salvation Army's Chikankata Health Services, involvement in the Care and Prevention Teams (CPTs) has helped PLWHA to identify infections at an early stage and seek medical attention as soon as they became sick. 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." No less important, they also enjoy improved psychological health because of increased peer support and decreased isolation.

One of the main disadvantages is that people with HIV often encounter difficult emotional experiences when they are involved in caring for PLWHA who are ill.

Main barriers

According to the abovementioned study conducted by Horizons and the Alliance, the main barriers that prevent the greater involvement of PLWHA in treatment programmes are a lack of a supportive environment, including stigma, discrimination and lack of access to treatment; and a lack of appropriate information, skills and training. In order to support GIPA on treatment issues, people living with HIV/AIDS must be able to access the relevant resources – information, skills, training, and an enabling, supportive environment that includes access to treatment. Issues of stigma and discrimination should be addressed through systematic education of the community, health-care workers and PLWHA about HIV/AIDS and ARV treatment availability, accessibility and adherence. Information on HIV/AIDS and HIV-related treatment should be provided at every level of the community with people living with HIV/AIDS, family members and health-care workers forming significant focal points.

As the global epidemic increases and greater numbers of people are being infected by HIV, the need for effective treatment in resource-poor settings is becoming more urgent than ever. People with HIV can play a key role in the provision of effective treatment and care. Developing pathways for their effective involvement can ensure that their role is recognised and actively supported.