HST Blog

​by Judith King

Why is it that not everyone who needs it is on HIV treatment?

If you are a gay man, or a man who has sex with men, or a lesbian, or a sex worker, or are transgender, or someone who injects drugs, it's likely that the clinic security guard, receptionist, or healthcare worker in the waiting area or consultation room will be unfriendly and unhelpful. You may be shouted at, sent to the back of the queue, mocked or insulted. Your medical issues may be discussed with others in public, and you may be forced to disclose your HIV status without consent. You may even be denied health services and told that you are too dirty and need to bathe before you can enter the facility.

If you are anyone who has been enrolled in care, but have struggled to adhere to HIV medication, and have missed a clinic appointment or your treatment has been interrupted, you may be shamed by the healthcare worker as a 'failure', with no concern for the socio-economic obstacles that you're facing or the psychosocial support that you need.

If you are a teenager seeking contraception, you may be scolded by a healthcare provider who believes that it is wrong for adolescents to be sexually active before marriage.

Generally, as a vulnerable person, you may face humiliation and rejection at the very point when you most need compassionate care, and you will not feel safe in the clinic environment.

These real-life scenarios have been documented by the Ritshidze ('saving our lives') Project, a coalition of non-profit HIV advocacy organisations representing people living with HIV (PLHIV) and working on community-led monitoring of public health services.

The South African government lists the damaging effects of such stigmatisation and discrimination as including "abandonment by spouse or family, social ostracism, job and property loss, school expulsion, and violence" which also results in "lower uptake of HIV preventive services, and postponing or rejecting care".

Why are these attitudes still prevalent in South Africa?

Commitment to confidentiality, patients' rights and reducing the stigma and discrimination associated with HIV and AIDS has been a cornerstone of the South Africa's National Strategic Plan on HIV/AIDS, STIs and TB, which promotes a people-centred approach, foregrounding principles of human rights and health equity.

However, even though the country's antiretroviral therapy programme – the largest in the world – has made HIV a manageable chronic disease, HIV infection is still seen in many communities as punishment for sexual sin, and PLHIV are stereotyped as being morally weak or wilfully irresponsible. This perception is not only unjust and illogical, but it also creates one of the greatest barriers to case-finding, treatment, care and support – and to manifesting the vision of HIV epidemic control.  

The association of disease with sin, which categorises our fellow human beings as either the blameworthy or the blameless, masks the everyday and extreme inequality and poverty that make people susceptible to HIV infection, and the many complex factors that influence and induce risky sexual behaviour.

Disclosure is only possible once a person has accepted their HIV-positive status, and stigmatisation is reinforced when people are afraid to be open. "By adding blame, shame or guilt to their problems, those who are sick suffer more"¹, because stigma and denial leads to people being abandoned and dying painful, lonely deaths.

Addressing the barriers to compassionate care

Yet the virus itself does not discriminate, and we all have a responsibility to support and protect humanity.

Dr Themba Moeti – CEO of Health Systems Trust – reminds us that the target of bringing an additional 1.1 million PLHIV into care by December 2025 is an important element of demand-creation. "To get everyone to (want to) know their status, and if positive, enrol on and stay on treatment for a long and healthy life, we have to ramp up and find innovative ways to sustain this message by empowering our clients and patients to take charge of their treatment."

He also recommends engaging beyond health facilities to find and support the men, young people, and others who are missing from care, such as in work and social settings in which men gather, at schools, and through faith-based gatherings.

A responsive health service is staffed with competent, empathetic and committed health service providers. Because stigma permeates throughout communities and into health facilities through care protocols and the staff who are charged with implementing them, reducing stigma can improve the health workplace environment, increase service uptake due to lowered social risk, elevate the quality of care provided, optimise patients' clinical outcomes, and the enhance the lives of families and communities.

Achieving a context of openness, solidarity and respect requires tailored, community-led interventions for communication and training programmes that heighten awareness, confront intolerance and enhance knowledge:

• The Ritshidze Project recommends that all facility staff (including clinical staff, non-clinical staff, lay staff, and security guards) who ill-treat people, violate their privacy, or verbally or physically abuse or harass them must be held accountable and face consequences. 

• The South African National AIDS Council (SANAC) urges for mobilising communities through outreach programmes, educational campaigns, and partnerships with local organisations to identify and link people living with HIV to treatment services.

• The message from the World Health Organization (WHO) is that the we can end AIDS as a public health threat by 2030 if everyone's rights are protected, and with communities in the lead.
  

• Research presented at the 24th International AIDS Conference recommends peer-driven service delivery approaches, especially for key populations and vulnerable groups, as well as multi-level training interventions that address individual health workers, with a focus on client interactions; the interpersonal level, focusing on relationships between health workers; and the institutional/health facility level for capacity-building on stigma reduction led by clients living with HIV and facility staff.

How Health Systems Trust (HST) contributes to reducing HIV-related stigma

Guidance on mitigating HIV-related stigma and discrimination forms a key part of training conducted via the South Africa Sustainable Response to HIV, AIDS and TB (SA SURE PRO Project), funded by the U.S. President's Emergency Fund for AIDS Relief (PEPFAR) through the Centers for Disease Control and Prevention (CDC). Components focusing on HIV testing, disclosure and treatment literacy, as well as on other sexually transmitted diseases (STIs) and sexual and reproductive health rights emphasise the importance of confidentiality and privacy.

HST also participates in a multi-year National Department of Health programme designed to train health workers on human rights and ethics, funded by The Global Fund and implemented in all nine provinces of South Africa. This training focuses on human rights and gender-related barriers that affect the spread of HIV, STIs and TB, increase people's vulnerability, and create challenges for them to access services. HST is sub-contracted by the National Institute for Community Development (NICDAM) to roll out the training in Gauteng, North West, Northern Cape and Free State Provinces until 31 March 2025.

The areas covered in this programme are stigma (including self-stigma) and discrimination; human rights violations against people living with HIV and key and vulnerable populations; and sexuality, gender inequality, gender diversity, harmful gender norms, and gender-based violence and femicide. Topics include relevant laws, policies and national guidelines, understanding sex, gender and sexuality, and moral values and ethical decision-making in the context of HIV and TB. The module features powerful videos of a gay man and a transgender woman sharing their experiences of healthcare workers' attitudes.

A call to action

In all of our social spaces, let us uphold the dignity of all people and their right to health – regardless of their gender, age or identity – and do whatever we can to ensure that the fears and myths that fuel HIV-related stigma are dispelled.

For more information on the work that the Health Systems Trust does do visit our website: www.hst.org.za

References

1. Van Niekerk AA, Kopelman LM. Ethics and AIDS in Africa – The challenge to our thinking. Cape Town: David Philip Publishers, 2005. page 216.