Positive Life NSW

Living with HIV has changed dramatically over the last 20 years. As treatments have improved, our life expectancy has slowly risen and is approaching that of people without HIV. As a result, we are now more likely to live into our senior years and this means we have to consider a new challenge: ageing with HIV.

In 2007, the average age of HIV diagnosis in Australia was 38 and this is predicted to rise to 44 in 2010. The arrival of effective treatments has meant people with HIV are living longer, healthier lives and are unlikely to have any HIV-related illness until they are much older. Now, nearly 30% of people with HIV in Australia are aged over 50 and this percentage will only increase.

While the average age of the HIV population is growing, so too is the number of people living with HIV. This is due to a dramatic fall in death rates, as new infections have remained relatively constant.

In Australia, the number of people with HIV on antiretroviral treatment almost doubled in the period 2000–2006.¹ Effective treatments have meant we are living longer and are unlikely to have any HIV-related illness until we are much older. So, we are living longer and have greater access to treatment, which is good news. Right?

The general belief is that treatments have decreased disease burden; they certainly did so in the short term. In the long term, they have undoubtedly increased survival. A great proportion of the over 50 HIV-positive population will have had HIV infection for more than 15 years and will have been on HIV treatments for over 10 years. This is something we couldn’t have imagined in the early years.

Unfortunately, despite these great gains, more and more evidence suggests that living longer with HIV means we are likely to face additional non-HIV-related illnesses, or co-morbidities.

Most reviews about HIV and ageing stress illness, disease, co-morbidities and treatment complexity. For example, a recent Australian study notes:

"A consequence of successful therapy with subsequent ageing of those infected has meant that from 2001 estimated deaths from other causes exceed AIDS deaths in Australia … In summary, our analyses indicate an increasing and rapidly ageing population living with HIV in Australia. This will inevitably lead to more serious non-AIDS conditions in ageing patients living with HIV, and to increased treatment complexity." ²

Although ageing is a normal process without a ‘treatment’, ageing with HIV is invariably played out in a medical context related to disease. The emphasis in clinical work is shifting from antiretroviral treatment and resistance, to the secondary illnesses associated with HIV and ageing. This shift is likely to define ageing with HIV for at least the next generation.

Identifying the issues

There is no doubt that ageing causes a loss of immune function and there are age-related risk factors for disease in people without HIV. The diseases, systems and organs most frequently associated with HIV and ageing are similar to those of the general ageing population: the nervous system, gastrointestinal system, metabolic conditions, cancers, mental disorders and the heart, liver, skin, eyes and ears.

There is little we can do about ‘normal’ ageing. But, what is it about living longer with HIV that makes us more prone, at an earlier age, to age-related illnesses?

The short answer is that some secondary illnesses are associated with antiretrovirals, while others are probably caused by HIV infection itself.^3–5 Lifestyle risk factors, drug toxicity and persistent immune dysfunction and inflammation also play a role in the illnesses associated with HIV and ageing.

Researchers are beginning to understand that long-term HIV infection may be an independent risk factor for many of these secondary illnesses. A recent study showed that HIV infection alone is as big a risk for developing atherosclerosis as traditional risk factors like smoking.⁶ However, there is a lot more to be learnt about which factors are important for particular co-morbidities.

Knowledge about persistent immune dysfunction and inflammation is growing, but there are unlikely to be effective medical interventions for at least a decade. Fortunately, efforts continue to be made to improve treatment toxicity and long-term side effects, but progress is also slow.

The awareness of the importance of addressing modifiable risk factors is still limited among people with HIV and not yet reflected in treatment guidelines or given sufficient priority in community education efforts. This is one area where change could occur more quickly as there are a number of lifestyle interventions such as quit smoking that can dramatically improve our health and lower our risks of heart disease (see www.nomorebutts.org.au).

If length of HIV infection and treatment play a role in premature ageing, then we can expect a large increase in the prevalence of secondary illnesses. This growth in co-morbidities, increase in use of multiple medicines (polypharmacy) and uncertainty in risk factors is likely to increase demand for detailed treatment information.

Defining HIV and ageing

Although medical knowledge is incomplete, strategies to address HIV and ageing are underway. There have been numerous international medical meetings on HIV and ageing and some medical guidelines for treatment and care are being developed.

What appears to be missing from this dialogue is the voices of people with HIV and an understanding of the social issues associated with HIV and ageing. Issues such as loneliness and social isolation are important considerations as they can have a detrimental impact on health.

In the general community, people often rely on family support as they age, but it is more often the case that older people with HIV do not have such family support. There has been little planning to cater for the social and support needs for those of us ageing with HIV.

While the health system can provide some social support, broader community support programs will be essential.

In the early response to the epidemic, there was immense gay community support. Volunteers moved in to fill gaps in services that couldn’t be met by the health system. For better or worse, as the response to HIV became mainstream and moved from epidemic and crisis to endemic and ‘normal’, many of these support systems moved to professional health systems and community support.

The partnerships that defined the early response to HIV/AIDS – between governments, doctors, health professionals, researchers, affected communities and people with HIV – need to be reignited.

Before the development of effective treatments there was a very intense engagement between people with HIV and medicine. Both sides agree that this partnership resulted in good outcomes. However, as effective HIV treatments became available, we formed a different relationship with our illness, often handing control back to our doctors.

As we begin to confront the complexity of HIV and ageing, a new partnership between medicine and older people with HIV must be forged. The conversations need to focus on how lifestyle and medicine can allow us to live healthier, more enjoyable lives. Any talk about treatments should include discussion of quality of life issues.

Medicine appears to be defining HIV and ageing as an inevitable, complex disease state. This could be damaging for younger and older people with HIV as it may lead to lots of unwanted treatments and interventions.

Older people with HIV need to be included in the discussions around appropriate medical guidelines and social support structures for ageing with HIV.

There are few stories about successful ageing but, despite the bleak landscape being painted by medicine in the diversity of the HIV and ageing experiences, there must be many stories of success.

If you would like to share your story of ageing with HIV, please contact Kevin at editor@positivelife.org.au or on 9361 6011.

This article is based on a report written by Ross Duffin.

References:

1. Trends in antiretroviral treatment use an treatment response in three Australian states in the first decade of combination antiretroviral treatment. Falster K et al. Sexual Health. S: 141–154.
2. Rapidly aging HIV epidemic among men who have sex with men in Australia. Murray JM, McDonald AM, Law MG. Sexual Health2.2009; Vol 6; No. 1: 83–86
3. HIV Infection, antiretroviral treatment, ageing and non-AIDS related morbidity. Deeks SG, Phillips AN. BMJ 2009;338:a3172.
4. The older HIV-positive adult: a critical review of the medical literature. Martin CP, Fain MJ, Klotz SA. Am J Med. 2008 Dec; 121(12): 1032–7
5. HIV in older adults. Simone MJ, Appelbaum J. Geriatrics. 2008 Dec; 63: 6–12.
6. HIV Infection Is an Independent Risk Factor for Atherosclerosis Similar in Magnitude to Traditional Cardiovascular Disease Risk Factors. Grunfeld C, Delaney J, Wanke C et al. CROI 2009.
7. HIV futures five. Life as we know it. Grierson J, Thorpe R, Pitts M. October 2006. Monograph Series Number 60.