Is it time to shift the focus of HIV care?

19 August 2021

Experts are calling for healthcare for people with HIV to move beyond viral suppression to address long-term health and well-being

A woman smiling holding a baby

HIV experts have released a ‘consensus statement’ outlining how healthcare for people with HIV would be more effective if it focused on long-term well-being rather than on viral suppression.

More people with HIV are virally suppressed than ever before. But people with HIV are still more likely to have poorer health and well-being than people without HIV, even if they are virally suppressed. This is particularly true for people who are marginalised.

To understand why this is and to look at ways to change the situation, 44 HIV experts from across the world, including people with HIV, have outlined the major issues that affect the long-term health and well-being of people with HIV.

The consensus statement lists 31 areas, most of which are not currently monitored. These fall into three themes: stigma and discrimination, having more than one health condition, and health-related quality of life.

Stigma and discrimination

Discrimination against people with HIV in healthcare is one of many rights issues that leads to poorer health. People with HIV experience longer waiting times, disrespect, negligence, a lack of confidentiality and are sometimes denied treatment.

Linked to this is HIV criminalisation and the criminalisation and stigmatisation of various activities associated with HIV risk. HIV-related stigma can also mix with other forms of stigma and discrimination, such as those relating to race, age or sexual orientation.

Privacy and confidentiality, access to justice, and meaningful participation in health decision-making are other rights-related issues that affect long-term health and well-being.

Having multiple health conditions

People with HIV are more likely to have other health conditions than people without HIV. This is known as ‘multi-morbidity’ and it increases with age. Common conditions include hepatitis and tuberculosis, and diseases like heart disease, kidney disease and cancer that people tend to get as they age. People with HIV are also more likely than people without HIV to experience depression and other mental health issues, including substance use disorders.

People with HIV who have other health conditions experience higher levels of hospitalisation, healthcare costs and negative drug reactions than other people, and lower health-related quality of life.

Because some people with HIV have other health conditions, healthcare that only focuses on one health condition at a time is likely to be inefficient, particularly because some health conditions share the same risk factors.

Integrated healthcare for people with HIV, which treats different conditions at the same time, is likely to be more effective and cost-effective.

Health-related quality of life

People with HIV report many things that affect their health-related quality of life.

Factors can be physical (e.g. being in pain), cognitive (e.g. having a poor memory), psychological (e.g. having anxiety), social (e.g. feeling isolated) and functional (e.g. not being able to live independently). They can also relate to general welfare (e.g. having money worries), spiritual well-being (e.g. achieving a sense of peace), and information (e.g. understanding about a health condition).

Despite people with HIV reporting that these issues are important, they are often missed by health providers during regular check-ups. This is particularly true for non-physical issues.

One way to address this is to use patient surveys to track health-related quality of life. This is useful for understanding people's experiences of healthcare as well as the issues they experience living with complex health conditions.

The consensus statement outlines things that can be done to advance the long-term well-being of people living with HIV. These include monitoring co-morbidities in patient health records. Another is to pilot HIV care that addresses things such as healthy aging, which patients could test using health-related quality of life measures.

Piloting integrated care for people who have been marginalised is also suggested. This includes community-based mental health services and peer support programmes.

Written by Hester Phillips