Positive Life NSW

Ross Duffin ponders the meaning of living long term with HIV and what we can do to address the challenges of ageing with HIV.

When I got my HIV diagnosis more than 20 years ago, I never expected to get old or be classified as ‘ageing’. At the time the "Syd-e-ney" Olympics were announced, I thought I wouldn't be alive to see them. But I was. And now in HIV years I am ageing.

A few years ago, I retired from full-time work due to physical illness and depression. I basically went home to die passively – there was no road map for being old with HIV.

This year, my former workplace asked for a small bit of assistance in finishing off a booklet they were doing on HIV and ageing (due out later this year). As I began reading the literature about HIV and ageing, I recognised myself. Me and my so-called comorbidities were jumping out of the pages at me. I could feel a new identity coming, ‘HIV and ageing’, but this felt better than ‘HIV and discarded’.

My story is not an unusual one. In 1995, when new treatments arrived, there were just over 11,000 people living with HIV and about 1,500 were over 50. The last Australian HIV Surveillance Report (2009) documents about 17,500 people living with HIV and nearly 5,400 are aged over 50 (roughly 31%). The growth rate in numbers of people with HIV over 65 is even greater. The median age of people living with HIV in Australia goes up by one year every two years. If this continues, by the end of the next decade about 50% of people living with HIV in Australia will be over 50.

There's now a lot of medical and research interest in HIV and ageing. Yet in the emerging dialogue it is rare to find the voices of older people with HIV. It feels like more than a generation after we said “we are part of the solution, not the problem”, things have gone back to the old ways of thinking and doing.

‘Normal’ ageing is associated with a number of medical conditions. These are often, quite dreadfully in my opinion, referred to as comorbidities. Now, I've been morbid at times, but I don’t want to be known as ‘Mr Comorbid’.

Typically, a 75 year old without HIV will be on pharmaceutical treatment for at least two conditions associated with ageing. In people with HIV, the typical picture is these ageing comorbidities occur at a much younger age and in greater frequency. So, a typical 55 year old who has had HIV for more than 10 years will be on treatments for more than two ageing comorbidities.

Sadly, for those of us living with HIV, parts of our bodies and systems get ‘older’, faster. The precise reasons for this premature ageing are unknown. It is considered to be a mix of normal ageing, the drugs used to treat HIV, HIV itself and lifestyle factors (such as smoking) which tend to be more common in people with HIV.

This data has consequences for all people with HIV. From the moment you get your HIV diagnosis, you should probably start to think about reducing your risk of ageing comorbidities – this is emerging as probably as important as taking HIV antiretrovirals.

Even when you already have some ageing comorbidites, it’s not too late to take some preventions. I've been walking 15,000 steps a day and the improvement in my psychological and physical well-being is immense. But if you have to do the rounds of a few specialists, taking the time to look after yourself means that working full time is often difficult. Early retirement may have to be the norm for people with HIV, and this comes at a time when the retirement age is going in the other direction.

I didn't live through the last 25 years to spend the last years of my life mired in comorbidity without doing something about it. As people with HIV, we engaged with medicine and drug regulators in a discussion about ways to expedite the arrival of and get early access to effective treatments. Now a generation later, it looks like we need to engage again – but in a different way. We don't expect a cure to ageing – ageing is normal and it isn't morbid and some aspects of ageing are actually fun – but we do expect a say in appropriate treatment and services for us to help us age well.