Stigma and Discrimination Among People Living with HIV


The Lancet HIV

37.9 million people are estimated to be living with HIV, and those on successful antiretroviral therapy (ART) can expect to live a normal lifespan. In 2018 global progress towards the UNAIDS 90-90-90 targets (for 90% of those living with HIV to know their status, 90% of these to be on ART, and 90% of these to be virally suppressed) stood at 79-78-86. Although much work remains to identify those living with undiagnosed HIV and to roll-out treatment to all, health services must also evolve to incorporate the complex, diverse, and changing health-care needs of people living with HIV. Viral suppression remains an essential goal, but it is not the sole endpoint of HIV care. In recognizing the importance of looking at the health and well-being of people with HIV we are delighted to introduce a Series, HIV Outcomes Beyond Viral Suppression, published in The Lancet HIV, the first paper of which is included in this issue.

Series authors Safreed-Harmon and colleagues argue that, in the modern ART era, health-related quality of life for people living with HIV should be given equal importance to the UNAIDS 90-90-90 targets: sometimes referred to as a fourth 90. But how do we define this fourth 90, and how do we measure progress? As Kall and colleagues’ Series paper shows, a wealth of patient-reported outcome measures exist to capture these data, both specific to HIV and more general. However, with no consensus on which measures to use and patchy collection of such data comparison across studies is challenging. In oncology, patient-reported outcomes have been incorporated into trials for over a decade, which sets an example for HIV research to follow.

Stigma and discrimination are difficult to measure but often cited as barriers that prevent access to health care for people living with HIV. As highlighted in the Series paper by Anderson and colleagues, results on interventions aimed at reducing stigma are often inconclusive. The UNAIDS key populations atlas provides some data on stigma and discrimination but is incomplete. The data we do have, however, paint a stark picture. In Algeria, 53.5% of people living with HIV reported being denied health-care services because of their HIV status.

Even in Botswana, a country that has responded robustly to its epidemic, this figure was 3%, equating to 11 100 people if the total population living with HIV is considered. Key populations, who are more likely to be living with HIV or to benefit from HIV prevention measures, also suffer huge amounts of stigma and discrimination, with 65.1% of transgender people in the Dominican Republic and 75% of men who have sex with men in Laos avoiding health care as a result. Measurement of progress on reducing stigma and discrimination is crucial. Thailand is a leader in implementing packages to address these issues and routinely capturing data. Contrasting with its neighbor Laos, substantially fewer men who have sex with men in Thailand report avoiding health care because of stigma and discrimination (5.6%).

People living with HIV face many challenges with their health-related quality of life. Problematic drug use and alcohol use disorder are more prevalent than in the general population. Consensus on the global rates of depression and anxiety is missing for people living with HIV, but in a study from China depression was reported in 50.6% of people living with HIV, against a background rate of 1.6–7.6% for the general population, and in a study from Nigeria, 21.7% of people living with HIV presented with anxiety disorders. Globally WHO estimates the rate of depression as 4·4% and anxiety disorders as 3·6%, indicating the large burden people living with HIV face.

Another issue of growing importance is the effects of ageing with HIV. UNAIDS estimates that in 2018 the number of people aged 50 years or older living with HIV globally was 7.5 million, more than double the 3.3 million from a decade earlier. The inevitable and inexorable ageing of the HIV epidemic is beginning to create a whole new raft of challenges in providing care for people not only beset with the well known effects of time, but allied issues of stigma, long-term treatment, and life-long infection.

As the health-care needs of people living with HIV continue to move beyond specialist services, good quality care, free from stigma and discrimination, is essential. HIV status must not lead to exclusion from or denial of services. Achieving these aims will require changes across health and social care. Universal and adaptable approaches to measure progress towards this goal are needed to ensure everyone living with HIV can achieve health and well-being beyond viral suppression.

In 2019, it is not enough that people living with HIV are alive. They should also be living well.



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