19/01/2017 03:15 GMT | Updated 20/01/2018 05:12 GMT

Uncharted Territory: What It's Like To Be Part Of The First Generation To Grow Older With HIV

Ian Green

HIV is often mistakenly assumed to be a young person's condition, and something that will shorten your life, so people still react with surprise when they meet an older person living with HIV.

These damaging misconceptions are masking the reality of the HIV epidemic in the UK - the over 50s are now the fastest growing group of people living with HIV.

People living with HIV can now live as long as anyone else, thanks to incredible medical advances. Meanwhile, new diagnoses among the over 50s have doubled in the past 15 years, with changing dating and sexual patterns and a lack of sexual health information reaching older people.

Today, one in three people with HIV in the UK is over 50. At the age of 51, I am one of them (just!).

When I was diagnosed in the 1990s, HIV treatment had just become available - but people didn't know how effective it was going to be. I thought I maybe had ten years of productive life ahead of me.

Thankfully, this was not the case, but I know from experience that re-adjusting to the idea of living into old age, when you had accepted this was not going to happen, takes a complete resetting of your mindset. So for someone diagnosed in the 1980s, before treatment was even discovered, one can only imagine the upheaval as they adjust to a future they never believed they would have.

Many hadn't expected to live beyond a couple of years and as a result, are now less likely to have savings or pensions, and many others have become socially isolated. A friend of mine who is living with HIV in older age was recently diagnosed with Post Traumatic Stress Disorder, such was the turmoil he faced as he started to emotionally process everything he'd been through over the past decades.

So this is the first time we've seen people grow older with HIV on such a scale. Thirty years after the AIDS crisis took so many precious lives from us, it is extraordinarily positive to see this progress - but there are a lot of unknowns facing those of us growing older with HIV.

We don't know what the long-term impact of taking decades of anti-retroviral therapy will be on older people. We don't know how HIV will interact with other conditions associated with old age. What are the implications of HIV and age-related dementia, for example? We don't know - we are the guinea pigs.

We also don't know if the health, social care and welfare systems are ready to support this fast-growing ageing population. I fear they are not.

Terrence Higgins Trust has recently surveyed 240 people over 50 who are living with HIV. Our groundbreaking report, out today - Uncharted Territory - has captured the reality of what it means to be part of the first generation of people to grow old with HIV.

And what we do know is this: poverty, loneliness and social care are major concerns for older people living with HIV.

Nearly six in ten (58%) over 50s living with HIV were living below the poverty line. Meanwhile 82% were experiencing moderate to high levels of loneliness - three times more than over 50s in the general population. A quarter of respondents said they would have no one to help them if they ever needed support with daily tasks, and 88% hadn't made financial plans for their future care needs. This paints a worrying picture.

In our research, we also heard how older people with HIV have been turned away from care homes or treated unfairly. One lady living with HIV in a care home was encouraged to spend as much time as possible in her room to avoid contact with other residents. When she did leave her room she was only allowed to sit on one chair and the television remote was wiped down with antibacterial wipes after she'd used it.

This is shocking and a real cause for concern, as more and more of us grow older with HIV and require social care. A major shift in awareness and training for social care staff is needed, to ensure they have the skills and knowledge to support the increasing numbers of people growing older with HIV.

As I look ahead to my own old age, I don't just want to survive, I want to thrive, I want to work, and grow old disgracefully. I don't want to be constrained by my HIV status or discriminated against in my place of care.

This report should be a wake-up call to governments. The issues faced by people growing older with HIV can no longer be ignored, as the challenges of poverty, loneliness and social care grow more acute. The time for action is now - we must get ready to support people with HIV to live well in later life, while facing the uncertainty of what lies ahead.

We know this is a population that too often feels forgotten by society. In our report, we have now heard their voices and captured their realities of living with HIV in older age.

We now have a duty to amplify these voices - and to ensure our GPs, our care homes and our communities are listening.

Read the full report, Uncharted Territory, at