HIV & the Law: Empowering People Living with HIV

In 2021, HIV remains one of the most stigmatized infections around the world. In South Africa, over 7 million people live with HIV (PLHIV), making it the highest burden country for the disease.

Despite 90% of people in South Africa being aware of their HIV status, misconceptions and misinformation continue to alienate PLHIV from their communities, creating a barrier to seek and access treatment care and support. 

Access to legal services for PLHIV and those that are affected by it, is essential for an effective response to the epidemic. 

Amelia Vukeya Motsepe, IRD Head of Contracts, Grants and Corporate Affairs, published a comprehensive book in 2016 called ‘HIV and the Law in South Africa: A Practitioner’s Guide.’ 

The peer-reviewed work has been compiled by experts in the respective fields of employment law, access to healthcare and right of privacy.

‘HIV and the Law in South Africa: A Practitioner’s Guide’ is intended as a useful resource to enable legal practitioners to provide efficient and professional legal advice to PLHIV in such contexts as the workplace, access to healthcare, and the rights of women and children. 

Even more importantly, the book aims to create greater awareness amongst lawyers that HIV is a daily reality for over 6 million South Africans, emphasizing that law professionals can, and must, play an active role in the fight against HIV and AIDS, sharing the essential knowledge required to do so.

In January 2020, Amelia was approached by a local organisation called ProBono.org, a legal clearing house in South Africa for law firms that volunteer to do pro bono work for people who can not afford legal fees. Through their established Tuberculosis (TB) and HIV Legal Clinic, they place a special focus on infectious diseases. 

Can you tell us more about this project with ProBono.org?

The organisation basically asked me to do a simplified version of the Practitioner’s Guide, focusing more on access to health care for key and vulnerable populations, with legal rights and remedies. 

The ProBono.org Human Rights programme objective is reaching key and vulnerable populations utilising customised and targeted interventions. These interventions include activities on:

• Legal empowerment
• Training of paralegals on issues related to HIV, TB and human rights
• Legal and paralegal support to community members whose human rights have been violated including pursuing identified matters to court
• Sensitisation of judiciary, lawmakers and traditional leadership especially those involved in traditional courts.

HIV and TB cut across different areas of law, and this poses a unique challenge in navigating through the relevant legislation and regulations that protect and promote those rights. 

This legal resource gives practical information on current and evolving legislation, common law and policies pertaining to HIV and TB in South Africa with the aim of educating, sensitising and providing updated information to paralegal and legal practitioners alike. 

This pertains especially to those who are engaged in offering legal advice and services to individuals and communities serving members of the vulnerable and key populations that are a focus of this human rights programme.

Why is this resource important in relation to access to health care?

HIV and TB infections thrive in conditions of structural inequity, where the complexities of poverty, social inequity, disempowerment, rights violations, conflict and patriarchy render communities susceptible to infections and marginalize access to diagnosis, treatment and care.

The chapters describe in detail the barriers to HIV and TB treatment and services for key vulnerable populations. The key vulnerable population subsections are meant to discuss the different obstacles these populations experience in the world of various settings, and to show the similarities in legal remedies for access to health care, and stigma and discrimination in other public and private institutions.

For the example: 

(1) Prisoners – HIV and TB prevalence in prisons is often far higher than in the general community, yet prisoners are often neglected, and overlooked to rin HIV testing, TB screening and accessing treatment and other health care services. 

(2) Foreign nationals:  Most immigration systems struggle to deal adequately with the millions of asylum seekers and migrants who have entered the country. As a result, foreign nationals have struggled to access social services including health care. There is no coherent government policy dealing with health and welfare services specifically for refugees and asylum seekers In addition, there is often a gap between the rights conferred by law and the access to health care that foreign nationals actually enjoy. The shortcomings in implementation often result from “institutional failures, the denial of social services and abuse from the police, which manifest as ignorance, xenophobia and legal discrimination.

(3) Women: The violence that many women face – revealed by such high levels of rape and domestic abuse – is a factor in the country’s HIV epidemic. Women who are unable to negotiate safer sex and the use of condoms will inevitably be at a greater risk of HIV. Research has found that women who have been physically and sexually assaulted by their partners, as well as those who are in relationships with men who have a greater degree of control over them, are at a higher risk of HIV infection. It is estimated that nearly one in seven cases of young women acquiring HIV could have been prevented if the women had not been subjected to intimate partner violence. This highlights how HIV and healthcare services cannot be separated from women’s rights, and that HIV prevention strategies need to challenge social norms around masculinity and sexual entitlement. 

How do you hope that this resource will help communities affected by HIV?

While this resource is South Africa focused, it has aspects of international law that any organization working on human rights and access to health care – for PLHIV and those with TB – can use to lobby their own government for law reform in this area. 

We hope that the legal and policy framework in this resource will be used to ensure people are educated and empowered to assert their rights to equality, dignity and privacy, especially in the context of access to health care.

We would also hope that it will be a reference and guide to people working in the field of health and human rights, thus helping to reduce stigma and discrimination, and promote access to justice.