EATG » Ageing with HIV: Testimonials of Stigma and Discrimination in Healthcare Settings

Ageing with HIV: Testimonials of Stigma and Discrimination in Healthcare Settings

Thanks to substantial and rapid improvements in HIV treatment, it is now possible for people whose HIV is diagnosed and treated appropriately to live into old age. This is the case across much of Europe, though not for everyone. But as more people living with HIV become older, their needs and concerns are gradually shifting from HIV to mental health and other long-term diseases, including heart, lung, bone, and skin conditions.

Increasing numbers of people are experiencing co-morbidities and co-infections alongside the long-term impact of HIV. Some are a direct consequence of HIV, while others relate to natural ageing, to the ageing-related social and psychosocial barriers due to stigma and social exclusion or to lifestyle decisions made in the expectation of a shortened lifespan. Ironically, the pill burden that has decreased dramatically for most people with HIV in recent years is likely to increase again to respond to their age-related co-morbidities such as cardiovascular problems or chronic obstructive pulmonary disease (COPD).

This situation is likely to increase the complexity of care management for older people with HIV, demanding a change in the delivery of existing services. There needs to be a shift from a single disease management model to a multi-dimensional approach to care, involving clinicians in other specialities and a wider use of healthcare systems and bodies. In response to these and other concerns about ageing with HIV, the European AIDS Treatment Group (EATG) organised a series of seminars in 2017-18 to consider the impact of living longer with HIV for all age groups.


A key finding: The need to better address stigma in non-HIV specialist healthcare settings

Many people living long term with HIV were amongst the 286 participants from 30 countries who took part in these meetings alongside specialist clinicians and policy makers. The meetings developed a series of key messages from their personal experiences of managing HIV long term and into older age. Some of the findings were expected but many give new insights into the ways people with HIV are negotiating their longer-term health needs.

While AIDS-related deaths among people with HIV have reduced, deaths from cancer, coronary heart disease, and other co-morbidities are on the rise. Liver damage from hepatitis C worsens with ageing. Some treatments impact on the liver, and others interact with drugs associated with age (direct-acting antivirals (DAAs), statins, proton pump inhibitors (PPIs), anti-depressants, cardiovascular drugs). Due to these multiple co-morbidities, significant risks as people age are polypharmacy, drug-to-drug interactions and drug toxicity, which in turn affect pharmacokinetics and pharmacodynamics.

Crucially within this, many participants emphasised how negotiating multiple parts of health and social care systems complicate the issues faced by an ageing population of people with HIV. The need to better address stigma in non-HIV specialist healthcare settings was a key finding, alongside training for non-HIV medical professionals about living and ageing with HIV.


Sharing stories

So frequent were the stories that emerged of poor understanding and stigmatising attitudes to people with HIV from professionals working in medical services outside their HIV clinic, and so strong the fears of how people might be treated in these settings, that many participants with HIV reported a strong reluctance to access services which they needed for their ongoing good health, from surgery to dentistry and maternity services.

The stories captured here are typical of these experiences. They come from all parts of Europe; there is no country where generalist healthcare staff do not need training and support to better understand HIV in the 21st century. As people with HIV age, so they will need a wider range of services. Those services need to treat them with the same dignity and care as they would any other patient.


“When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen.”

read Aidai’s story (Kyrgyzstan)

“It increased my worry about any future health problems I might have”

read Fatih’s story (Turkey)

“She gave the other patients their food as normal, but then she stopped and put gloves on before she served me.”

read Alex’s story (Switzerland)

“They have clear infection protocols already but it’s just an irrational fear”

read Mario’s Story (Italy)