With improving anti-HIV treatments, positive people are living longer than many ever dreamed would be possible. But while that’s cause for celebration, writes DAVID MENADUE, ageing with HIV brings its own challenges.

Recently I helped celebrate the fiftieth birthday of a gay male friend who had done his darnedest to avoid any attention being paid to his reaching this milestone; he simply didn’t want the world to know for fear that an ageist society (and particularly gay scene) would regard him as ‘past it’, ‘sexually undesirable’ or a range of other unmentionables.

My friend is HIV-negative and I mused about how differently I had approached my fiftieth, three years ago: I was rapt to have made it this far, overjoyed that I could share this moment with friends when, ten years before at my fortieth, it looked like I might not survive much longer after experiencing a series of AIDS-defining illnesses.

HAART has made an extended life possible for many people with HIV. Almost a quarter of the recent HIV Futures 4 respondents were 50 years or over, having lived for an average number of 14 years with the virus (for those under 50, the average was 10 years since diagnosis)[1]. The actual number of people over 50 in the HIV-positive population is probably less than this – in the USA, for instance, 10-13 percent of the HIV-positive population is over 50.

With mortality rates from AIDS now very low, we also know that the median age of people newly diagnosed with HIV in Australia is now 37 years, suggesting that issues to do with ageing and HIV will now have to come to the attention of health providers like never before.

From a time when doctors and those involved in HIV care and support strived to keep us alive for as long as possible against difficult odds, we are now entering a period when, with relatively effective treatments, we may see people leading much longer life spans but with efforts now focused on improving quality of life. As the demographic of the positive population ages, the long term effects of living with HIV and of taking antiretrovirals for extended periods of time will become more evident.

In some respects, those of us who have been on treatments for fifteen years or more (since the experimental days of AZT) are likely to be a new type of ‘guinea pig’ once again. Will our health conditions reflect living with HIV long term, HAART use, the normal effects of ageing or a combination of all of the above?

Little research on HIV and ageing

Little research has been done in the area of ageing with HIV and some of the findings have been contradictory.

In the pre-HAART era, several studies showed that patients over fifty progressed more rapidly to AIDS and had poorer survival after an AIDS diagnosis. It is also known that when an older person becomes infected with HIV, the depletion of naive CD4 cells is more pronounced compared with younger people.

Scientists thought this might mean that older people would not experience equally significant rises in T-cells with the advent of HAART. However one study² of 101 older HIV-infected patients (average age 57 years) and 202 younger patients found those over 50 had similar rises in their CD4 counts after taking HAART and actually more of them obtained undetectable viral load counts than the younger group. This is put down to the older group being more adherent to their regimens and less likely to interrupt treatment.

As we get older our liver and kidney functions can decline and it is thought this may have implications for the dosing of antiretrovirals for older positive people. One study looking at the elimination of AZT from the kidneys of elderly patients found that it was substantially reduced, leading to toxic levels of the drug in the bloodstream³. Decreases in liver function with age could mean that there are higher levels of HIV drugs metabolised in the liver, leading to greater side-effects for older people.

Knobel et al⁴ in their study comparing people under 40 with those over 60 found that adverse events were much more likely to happen in the older group (64 and 35 percent respectively) and that these patients were more likely to swap to regimens containing non-nucleosides and sparing protease inhibitors because of their toxicities.

More research needs to be done in this area with the use of therapeutic drug monitoring (checking the troughs and peaks of drugs in the body) possibly more warranted in older people living with HIV/AIDS.

When older people don’t take HIV medications, we know that their risks of mortality are higher. In a study by Perez et al⁵ comparing mortality in 253 HIV-positive people over 50 with 535 younger patients, the older patients not receiving antiretrovirals were twice as likely to die compared with the younger untreated cohort. When the older individuals commenced HAART, their risk of dying declined two-fold and within a three-month period there was no significant survival difference between them and the younger group.

Will we now die from heart attacks?

The risks of conditions like cardiovascular disease, cancer, diabetes and osteopenia increase with age – and being HIV-positive and on HAART would seem to further increase the likelihood of ending up with at least one of these.

Those of us on HAART for a number of years, particularly on proteases long-term, have seen rises in our lipids and cholesterol and sometimes insulin resistance. Preliminary data from the Data Collection of Adverse Events (DAD) study of 23,500 positive people around the world in 2003 has shown that taking antiretrovirals does increase your risk of a heart attack – the risk increased by 26 percent for each year of antiretroviral therapy – but the actual numbers of positive people experiencing heart attacks was still small (0.13 percent of the participants), opening questions around the relative severity of the issue.

The inflammatory responses involved with HIV infection may also be linked to heart attacks in positive people. With the use of cholesterol and blood pressure reducing medications and interventions such as exercise, dietary changes and stopping smoking though, it would seem that positive people can significantly reduce their risks so that adverse outcomes are far from inevitable.

Likewise, taking care of your calcium needs can help prevent the advent of osteoporosis. Bone density has been reported to be lower in HIV-positive men and women than the rest of the population and the longer you are positive the greater is the loss of bone density and the greater the risk of fractures or bone disease. Some research suggests that this is most likely to be linked to the cytokine activation involved in HIV replication rather than exposure to antiretrovirals.

As we lose calcium naturally with age, keeping up calcium supplements, vitamin D and dairy foods (if they can be tolerated – otherwise soy products can be substituted) is advised for older people with HIV. Also weight-bearing exercise is recommended to help preserve bone mass.

Or will we get dementia?

Many people nominate dementia as their greatest fear in growing old – whether they are HIV positive or not. Those of us who saw friends suffer from HIV-associated dementia in the 1980s and 1990s know it is not a pleasant thing, although in those days it usually didn’t involve a long protracted battle.

We know that HAART has reduced the incidence of HIV-associated dementia and that it is now only rarely seen in people who undergo antiretroviral therapy. Heavy prior use of recreational drugs and alcohol may also be a co-factor. Some research suggests that people over 50 on HAART have a three-fold chance of slowed movement or thought processes – forgetfulness, it could be called – but this cognitive impairment may only be mild and may not affect everyday life.

Caring for those who have suffered brain injury due to AIDS-related illness will continue to be a major concern for service providers as the numbers failing treatment (or inadequately treated for their HIV in the past) rises.

Perhaps the greatest issues we all have to contend with in growing old are the psychosocial ones. Getting older means declining sexual attractiveness and the added burden of lipodystrophy – the sunken cheeks, skinny arms and legs and bulging bellies – has not helped our self-esteem.

Marian Pitts from the Australian Research Centre for Sex Health and Society at La Trobe University in Melbourne recently presented an analysis of the HIV Futures 4 data looking at respondents over 50 compared with those younger⁶. She found that 40.5 percent of the over-50s were less likely to be having sex than the younger cohort and more likely to have lost their libido (67.6 versus 57.2 percent).

While we know that the virus and our treatments contribute to this – and Viagra can only help so much – mental factors play a major role here, too.

More significantly perhaps, Pitts found that the over-50s were less likely to be in a relationship – and less likely to use any service provider (HIV sector or not) to help with their care and support needs. They were more likely to have low income levels and to be below the poverty line (33 versus 25 percent). One could draw the conclusion that people over 50 appear more lonely and isolated, maybe disengaged from society, because of poverty, fears of age or HIV discrimination, feelings of depression or low self-esteem.

Older gay men are unlikely to feel comfortable in a gay social scene which places a premium on youth and beauty, although life would seem to be no easier for older positive women or heterosexual men looking for a partner either. Maybe disclosing one’s HIV status is a more difficult thing for an older person with HIV, particularly if you have been diagnosed later in the picture.

However this is only conjecture. More extensive research on older people is needed before we could be more definite in our conclusions. While I have no doubt that depression can be a major issue for older people with HIV, Pitts found that the over-50s in her cohort were less likely to regard themselves as depressed or to have a mental health condition (25.3 versus 37.3 percent). This group also scored higher when asked to rate their wellbeing (although they were less likely to say their health was good).

While support staff at AIDS councils confirm that a significant percentage of clients over 50 are isolated and have a poor quality of life for a range of reasons, it is clearly not the case for all.

The advantages of age?

I’m guessing that some older people will be just as likely to pride themselves on their self-reliance and ability to cope with the various disabilities that come their way – perhaps expecting it more than young people and be more likely to include the side effects of HIV as ‘just another part of the picture’. It could be surmised that age brings with it greater patience (sometimes!) and more ability to focus on your own needs – rather than the competing demands of family, employment and mortgage payments, for instance.

Social support is important no matter what your situation, and it is probably true that older people, without the structures of a job or a hectic social life, could more easily lose their traditional support and friendship networks. Special interventions will be needed in the future to increase opportunities for socialisation amongst the elderly in our community generally (as well as care issues like supported accommodation and nursing care) and as long as we have an HIV sector, our care and support services should be preparing for the specific needs of the HIV-positive population in this area.

I am only just entering my fifties and may have a few jolts awaiting me as I discover the reality of ageing with HIV. I am grateful that I have had the security of a superannuation income since my retirement (now some fourteen years ago!) Financial concerns undoubtedly worry the elderly as much as anything (maybe except their health). My experience of retirement is that there are opportunities to involve yourself in projects that involve you closely with other people – in my case it has been volunteer work with HIV agencies – to gain satisfaction from achievements and to allow you to use your mind on a regular basis.

In a weird way, having HIV has also probably taught me to care for my body better than if I was your average unhealthy middle-aged Australian man: all those vitamins, natural therapies, dietary changes and exercise programs may well stand me in better stead in the long run – who knows?

While I have no doubt that the strain on my body caused by HIV is considerable, I’d still prefer to assume that I’m not going to die anytime soon from either HIV or HAART-related toxic effects. While we can’t prevent the ageing process or all the damage caused by HIV, we can still do our best to live healthy lives.

Thanks to the HIV Hepatitis and STI Education and Resource Centre at the Alfred Hospital for help with this article.

‘An unblessed trilogy’

Barry is in his mid-sixties and has been living with HIV for at least 17 years. He was first diagnosed when he was 48.

I really didn’t want to risk passing on the virus to others so I became celibate for about 10 years. It was only after I felt confident that sex with condoms was safe that I had a few sexual partners. When I entered my sixties, my libido went anyway, so sex didn’t become such an issue – although I’m never quite sure whether I’ve talked myself into that to some degree. Have I denied myself that intimacy in my older age because of feelings of stigma about being HIV-positive?

The changes from [the mid-fifties] on were much greater than the three decades before combined. Of course I knew to expect changes as part of the normal process of ageing but I think HIV accelerates it. You lose your looks faster, you lose energy and strength and my feeling is that you don’t get a chance to adequately adjust to it mentally.

Nature is funny in some ways because it changes your attitudes to things in life as you age (like your need for sex, or major life achievements, it slows down your ambition a bit) and in the normal scheme of things, you get time to change with it. HIV takes away that adjustment and there is nothing gradual about the process.

I feel I’ve been given an unblessed trilogy at this time of life: I’m old, gay and HIV-positive. While I’ve accepted all three, they are not exactly a recipe for a stigma-free or easy existence in old age. We live in a terribly ageist society with the gay community being particularly bad at dealing with their seniors – the phrase ‘old queen’ is a very common and negative descriptive. I sometimes feel that I’m treated as invisible by people like cashiers at supermarkets – they will be nice to the young buck in front of me but rude or dismissive when I front them.

Time is of the essence when you get older. I lose patience when yet another nagging HIV-related complaint comes my way. I wish they would find a cure now.

When I think of the time sapping away I get frustrated that my quality of life never seems to improve. Is it HIV that’s causing me to feel shitty, the treatments, or just getting old – you just don’t know.

Thank god for my animals – my daily walks in the park with them are my sanity. At least with them I get nice feedback from other pet owners. They give me a purpose for living.

‘I am not the only one’

Margaret is 70 years old and was diagnosed as HIV-positive seven years ago.

I was old when I contracted the virus. It has not necessarily shortened my life, thanks to the modern drugs, but my quality of life has altered dramatically. You live entirely for the present and cannot plan for the future anymore. This brings a terrible sadness and sense of loss. Will I see my grandchildren married? Will I always be able to care for myself adequately? This is my biggest concern.

My family and my partner’s family cannot accept what has happened to us, so consequently our only form of help or advice is from people who are paid to offer these services. Because I chose to stay and assist my partner, who is much sicker than I with multiple health problems, I am constantly told, “You chose to be where you are – you chose him over us.”

You cannot ever say to your children “I feel terrible,” as their attitude is “you made your bed, you lay in it.” They never ask how you are feeling. I believe they are afraid of your answer as they would not know how to deal with the situation.

When you are feeling unwell it is hard to know – is it old age or the virus that’s responsible? You live with depression and a very low libido every day. You wake up in the mornings and wonder how you are going to get through the day. What is the point? Who can you talk to and know that they will not shun you? You tend to bottle your feelings inside of you and present a facade to the public.

The day you start medication is probably the most upsetting of the lot. You are about to put a tablet in your mouth that will not cure you and in all probability give you a life-threatening illness from the side effects of the medication. It could kill you. You have a terrible guilt feeling – not only have you betrayed yourself but your family and friends by letting this happen to you.

Your life is made up of constant medical appointments. Because we live in the country, we need to travel 600 kilometres on a round trip for our specialist treatments. We rely on organisations like Positive Women and Straight Arrows for help with accommodation when we visit the city. You feel like a charity case and at my age when I have been very active in social work (as a volunteer in several organisations), I find it very stressful to ask for this help.

On the other side … since being diagnosed I have met some wonderful people. There are many amazing people who care and are doing a great job, assisting and supporting us. I try to meet as many positive people as possible to get this thing into perspective. To know that I am not the only one feeling like this is comforting but very distressing to see so many young ones with some many diverse problems and dilemmas.

Margaret and Barry spoke to David Menadue. Names in this article have been changed.

References

¹ M.K. Pitts et al, Growing Older, living longer and treatments for HIV, Australian Research Centre in Sex Health and Society, La Trobe University, presentation to AIDS Update, Burnet Centre, Melbourne, April 2005

² Fair Wellons, M. et al, HIV infection: treatment outcomes in older and younger adults J Am Geriatr Soc 2002, 50:603-7 as discussed in Casau, N. Perspective on HIV Infection and Aging: Emerging Research on the Horizon CID 2005:41, 15 September. Ibid Casau, N.

³ Sauvageon-Matre, H. et al Pharmocokinetics of zidovudine in AIDS patients: influence of age and hepatic disorders, program for 5th International Conference on AIDS, Montreal, Canada, 1989. Ibid Casau, N.

⁴ Knobel, H. et al Response to highly active antiviral therapy in HIV-infected patients aged 60 years or older after 24 months of follow up, AIDS 2001;15:1591-3. Ibid Casau, N.

⁵ Perez, J.L. Greater effect of highly active antiviral therapy on survival in people aged 50 years compared with younger people in an urban observational cohort Clin Infect Dis 2003;36: 212-8. Ibid Casau, N

⁶ Pitts, M.K. ibid.