Growing older with HIV

Posted on: 26th January 2017

On Monday night, Terrence Higgins Trust launched their report into the first generation growing older with HIV. The report, entitled Uncharted Territory, explores some of the complex issues that are emerging among people who have been on antiretroviral therapy for a long time and are ageing with HIV – something that society has not had to deal with before.


Adrian, Head of Adult Services at Body & Soul, attended the launch. Here he shares some of his thoughts on the report.


This is an important report, shining a light on the first generation of people who are HIV positive and living into older age. Through my work running the services at Body & Soul for adult members affected by HIV, I am intimately familiar with many of the issues raised in the survey: the findings that 58% of respondents were defined as living on or below the poverty line and that 82% experienced moderate to high levels of loneliness chime with the concerns of the members I talk to every day. What is clear is that although great strides have been made over the last 20 years in developing effective medication for managing the virus, HIV is a complex condition that transcends artificial boundaries between physical health, mental health and psychosocial wellbeing. But who is joining the dots?

Body & Soul adopts a whole-person approach to care, which means that we often act as a central point of coordination for our members, liaising between HIV consultants, GPs. psychologists, social workers, local authorities and the individual living with HIV – who, ironically enough, can often get lost in the labyrinthine system supposedly designed to look after them. One of the issues raised in the report is the increased risk of co-morbidities associated with a HIV diagnosis and the need for “effective, coordinated, holistic long-term condition management”. This coordination is crucial. Organisations like Body & Soul act as advocates for our members, making sure their voices are heard in amongst all the professionals, and that professionals work together to ensure everyone is aware of the complexity of the issues facing older people living with HIV. This would all be made easier if the health system could adopt a more flexible, integrative approach to care rather than operating in silos and treating symptoms as if they were separable from the person displaying them.

At Body & Soul we work with families affected by HIV, and many of the adults who attend the service evenings I run have children or grandchildren who attend other Body & Soul services tailored to their specific needs. Understandably the Uncharted Territory report focuses on older individuals living with HIV, but we know from our work that the effects of HIV are felt across generational boundaries. Many of our younger members find themselves in caring roles because of the physical effects of the virus on parents or grandparents. The survey found that 84% of respondents were concerned about future financial difficulties. For those people with dependents, such concerns are likely to reverberate through the family. Ultimately the effects of HIV are not restricted to the person who is infected.

We welcome this report and hope that healthcare professionals and policy makers take note of the findings. We may be entering uncharted territory, but with the publication of this report, there’s no excuse for entering it blind.

The Uncharted Territory report produced by Terrence Higgins Trust.

The Uncharted Territory report produced by Terrence Higgins Trust.

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