Supporting people living with HIV to protect themselves and others

People who are diagnosed HIV-positive do not automatically acquire the skills to be able to negotiate safer sex and/or disclose their HIV-positive status to prospective sexual partners. Although most people aware they are living with HIV are often highly motivated to help others – including their sexual partners – avoid becoming infected, there has been little focus on how they can be assisted to develop the complex skills required for effective communication and decision-making in the sexual realm.²

When considering disclosure of their HIV-positive status in order to negotiate safer sex, people living with HIV may: face fears of rejection, stigma, discrimination, or even violence; have valid concerns over loss of privacy and confidentiality; and also desire to protect the feelings of others.³

While appealing to HIV-positive people to try to prevent onward transmission is of paramount importance, failing to recognise the significance of these other issues results in oversimplified HIV-prevention interventions that ignore the full spectrum of challenges shaping many HIV-positive people’s decision-making.

People living with HIV often have myriad physical health, mental health and social support needs, because (as explored further in the chapter: Responsibility) behaviour that leads to HIV exposure or transmission is often the product of underlying economic, social and other issues.

The public-health community’s first major efforts to promote HIV prevention among HIV-positive people became widely known as ‘positive prevention’, but some HIV-positive activists and other people advocating for the rights of people living with HIV objected that both the term and the concept were too narrowly focused. Positive Health, Dignity and Prevention, an alternative paradigm put forth by representatives from networks of people living with HIV, together with other experts convened by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Global Network of People Living with HIV (GNP+), links together the continuum of the journey experienced by people living with HIV from the moment of infection, through to testing, treatment, prevention, support and care, and locates this journey within a human-rights framework.⁴

Rather than focusing narrowly on behaviours associated with onward HIV transmission, Positive Health, Dignity and Prevention highlights the importance of people living with HIV being at the centre of addressing their health and wellbeing, with access to the programmes and support they need, within a socio-cultural and legal context which protects from stigma and discrimination. Policies and programmes that are designed and led by people living with HIV, and treat HIV-positive people humanely and holistically – as opposed to being treated as a potential vector of transmission that must be controlled via punitive measures – are likely to have a greater acceptance from people living with HIV; encourage beneficial disclosure of HIV status; and, by reducing HIV-related stigma and discrimination, may have myriad beneficial effects for their partners, families and communities.⁴

Case study: Nepal – Putting Positive Health, Dignity and Prevention into practice. Since 2007, eight community-based organisations in Nepal have collaborated on a Family Health International 'positive prevention' programme aimed at people living with HIV. Services include: counselling on disclosure and safer sexual and injecting behaviours for couples where one partner is HIV-positive and one is HIV-negative; promotion of healthy lifestyles and positive thinking and living; and education and outreach to sensitise the community around HIV-related stigmatising atittudes and discrimination. The programme has resulted in many benefits for people living with HIV, their partners, families and communities.⁵

UNAIDS and its partners believe that such an approach must be based on human rights, supported by legislation, legal services and other protective measures that together ensure non-discrimination, reduce stigma and change harmful gender norms.⁴ They also strongly advocate that the law be used to enable HIV-positive individuals to protect themselves and others, not through fear, but through empowerment and with dignity.

To achieve this, Positive Health, Dignity and Prevention:

• requires a supportive and protective legal and policy environment, free of discrimination.
• requires the decriminalisation of HIV non-disclosure, exposure and non-intentional transmission.
• requires removing criminal offences against men who have sex with men, removing criminal sanctions on sex work, and allowing the provision of evidence-informed harm-reduction programmes for people who use drugs.
• requires programmes to support people to know their rights and access legal services and other forms of redress when rights have been violated.