Authors: Andy Ustianowski (North Manchester General Hospital, UK)
In line with World AIDS Day this year we spoke to Andy Ustianowski (North Manchester General Hospital, UK) about the new challenges facing people living with HIV, including aging healthily and happily.
I’m a consultant in infectious diseases and also the research lead at the regional infection unit in Manchester, based in North Manchester General Hospital.
In terms of HIV, I’ve worked with people living with HIV since the early 1990s and I’ve been a consultant since 2005 at the base where I am now, which has a large cohort of people with HIV.
What challenges are currently being faced by people living with HIV?
There are always multiple challenges but I think when you step back and compare HIV in the last couple of decades with HIV now and it’s really transformed – in the 1980s and 1990s this was an almost invariably fatal disease but now it’s an infection that is compatible with a normal life and potentially a normal life expectancy.
However, this has actually brought new challenges, back in the 80s and 90s we never really thought about the issues of aging with HIV but now this has become important. For example, in my unit soon 50% of our patients will be over 50 years old and we have patients into their 70s and 80s. With age comes issues related to other comorbidities but also the potential impact of HIV on the aging process.
What new approaches might be able to address this challenge?
I think aging in HIV needs addressing in a variety of ways and I don’t think we’ve been very proactive over the last few years in actually contemplating it. It could be looked at in a variety of ways, from the basic science level looking at the impact of HIV on aging or on comorbidities, to looking at potential interactions between different diseases, all the way to how we provide care for someone living with HIV as they age, and whether the models of care that we’ve traditionally developed are really the most optimal models of care for the individual patient and for the health system.
Could you tell us about Gilead’s HIV Age Positively initiative and the rationale behind it?
HIV Age Positively is an initiative hoping to support programs that may help improve quality of life and health for aging in HIV. The support will cover four foundational pillars, which reflect areas of HIV care where innovation is needed to improve the lives of all people living with HIV: community action, personal health, equality and health services.
I think this is a very good initiative, what we’ve got is a team of diverse experts and an initiative that is focusing entirely on this question of people aging with HIV and it’s looking not only at people being more involved in their health but at the health system and other factors. To me, the key difference with this initiative is that it’s focused on trying to find things that are going to potentially revolutionize care and quality of life, compared with just incremental improvements.
The ethos behind it – and the reason the steering committee are actually largely non-medical and from areas outside HIV – is to try and bring in new thinking and identify if there’s something fundamental that we can change in the care of someone aging with HIV.
Do you think this cross-disciplinary approach is important?
I think from an initial starting point it is very important. Naturally we all want to improve systems and services but if you’re embedded in it, if you live in it for years, then actually you often can’t see outside the box. This leads to people making little, incremental improvements on the system that’s already there.
I think that involving people with different backgrounds, and sometimes wildly different backgrounds, brings in a new way of thinking and ideas from other areas we’re not aware of and this really is the best way of getting revolution rather than evolution. We’ll have to see what the outcomes are over the next few years!
How important do you think patient advocacy initiatives are for aging well with HIV?
Patient advocacy has been a key part of our progress in HIV all the way from the 1980s onwards; a lot of what we’ve managed to achieve has largely been on the back of active patient advocacy. However, it has changed from having messages related to access to drugs and equality in the early days to now addressing issues such as aging with HIV.
What we’ve got to be aware of is that aging with HIV is not all about tablets or coming to clinic, it is about living happily and healthily as you get older with HIV. Healthcare settings and healthcare professionals, such as myself, may not always be in the best position to be deciding on what initiatives are going to have a major impact and I think patient groups are key at highlighting the issues and at helping people through.
Do you think it’s increasing about quality of life?
Yes, I think it is. There’s a strategy called 90–90–90, the first 90 is about making sure 90% of the population with HIV are diagnosed, the second 90 is that 90% of these are on therapy and the third 90 is that 90% of these have an undetectable viral load. All of these things are vitally important to help decrease the burden of HIV and to decrease new HIV infections but actually there’s a fourth 90 that has been proposed, which is that 90% of those with undetectable viral load have a good quality of life. That’s quality of life in terms of health, mental wellbeing and also issues such as stigma etc. I think that’s vitally important – if HIV is compatible in the average person with a normal life expectancy we want it to be assessed on the quality of life not just the quantitative length of life.
What research/work do you think still needs to be done in this field?
Again, I think there are multiple aspects and multiple ways of looking at this. First, if we go back over the last few decades with the interventions related to HIV a lot of the initial data was based on 20–30 year old white men in America. More recently we’ve become aware that we might not be able to extrapolate that data to the average patient in our clinic or the average person living with HIV.
Although we now have data about women with HIV and about some comorbidities there’s still been very little research or very little study into aging with HIV. There have been some studies, such as a group called POPPY that are looking at aging with HIV within the UK, but it isn’t really embedded yet. If this is one of the major issues going forwards in caring for people with HIV – and indeed in people living with HIV themselves – then I would strongly advocate that we need to start particular research on this issue.
This research could go all the way from the basic science level of looking at the aging process, at the influence of HIV on aging, at the interactions and influence of HIV on comorbidities that come with aging, all the way to which care pathways, which systems, which setups we provide for people living with HIV that impact least on their life but improve quality of life the most. So I think we should be looking at this from a variety of directions.
Finally, any other comments or thoughts you’d like to add?
I’d just like to add that I am excited by the HIV Age Positively program. I‘m particularly excited by the fact that it’s looking for the big changes and is encouraging blue sky thinking and revolution rather than evolution. I’ve got nothing against evolution but if we could get at least one thing that is a revolution, that will have the biggest impact on people living with HIV.
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