At least one-in-five people with HIV in the UK is now over 50.1 Gus Cairns asks: What’s the recipe for staying fit and happy as we age?
“I’ve been getting very cross with articles – including one I read in HTU – that emphasise how people with HIV are going to die 10 to 15 years younger,” says John, 70.
“My recipe for long life is always to think positive and to refuse to be a victim of HIV,” he adds.
John is referring to the oft-cited assertion that people with HIV age 10 to 15 years in advance of other people2 – in other words that a 60 year-old with HIV has a biological age of 75.
Is this inevitable? Or does it involve factors we can control?
People diagnosed in the last few years who start antiretroviral therapy (ART) at a sufficiently high CD4 count, and stay on it, are likely to have a normal lifespan. One recent UK study found that a non-smoking, 30-year-old gay man, whose HIV is diagnosed promptly, could expect to live until he is 78, the same age as the average UK male.3
This doesn’t hold for everyone with HIV, though. Another recent study of life expectancy in people on ART found that, compared to the general UK population, life expectancy at age 20 was 18.3 years less for men and 11.4 years less for women.4 That means that, on average, life expectancy for someone aged 20 would be 59 if a man and 71 if a woman. Why the disagreement between studies?
On the one hand, excluding AIDS-defining illnesses – which now cause only a small minority of deaths in people taking ART5 – people with HIV also have higher rates of many other illnesses. They have about twice as much cardiovascular disease and 60% more heart attacks than the general population,6 are much more likely to get bacterial pneumonia7 and are at raised risks of many cancers.
On the other hand, this life expectancy deficit is overwhelmingly concentrated in people who are diagnosed late, and most of the deaths that bring the average life expectancy down occur in the first year after diagnosis.8 Also, life expectancy is an estimate of how long we might expect to live given current conditions and no further medical advances.
Anyway, who says you are average? If you’re reading HTU, you’re probably not. Half of HTU’s readers are over 50 – over twice the proportion in the general HIV-positive population. If you’ve already got that far, your life expectancy will now extend beyond 59 – and a lot of you will have reached that age already.
Dr Mike Youle is an HIV doctor with a particular interest in the health of older people.
“Some changes are inevitable natural processes,” he says. “Take high blood pressure. It’s not good for you, but given that it rises in virtually everyone as they age, is it an ‘illness’ or just a consequence of ageing that develops at different rates in different people?”
He thinks a lot of the observed deficit in life expectancy and overall health is due to the legacy of untreated AIDS in the pre-ART era.
“A person who’s had zero T-cells at some point in their life may never repair the gaps in their immune system,” he says. “Their vulnerability to illness may be very different from someone who was treated soon after infection.” This is borne out by studies that show that the likelihood of developing cancer9 or HIV-related brain impairment10 is related much more strongly to a person’s lowest-ever CD4 count than to their current one. “There is also some evidence HIV directly ages cells,” he adds.
So if we take ART, we should stop ageing faster? No, unfortunately. The one class of HIV drugs that virtually everyone on ART has taken are the NRTIs – the nucleoside reverse transcriptase inhibitors. NRTIs prevent HIV’s DNA copying its genes. To a lesser extent, they also interfere with our own genes, especially those in our mitochondria.
Mitochondria are little capsules inside our cells that supply energy. Their genes are vulnerable to drug damage because they lack the error-correction mechanisms of the DNA in our cell nuclei. We’ve largely stopped using the drugs most toxic to mitochondrial DNA – ddI, ddC, d4T and, to a lesser extent, AZT – but the damage may be persistent, and all NRTIs may cause some mitochondrial toxicity.
Mitochondrial toxicity causes a whole range of effects seen in people with HIV – fat redistribution, type 2 diabetes, liver malfunction, nerve damage, damage to blood vessels.
By now, you may be feeling anxious. But there are things you can do to reduce the likelihood of age-related conditions.
“Exercise and diet are key,” says Mike. “In many ways, treated HIV and type 2 diabetes resemble each other. They can be exacerbated by an unhealthy lifestyle, but the burden of disease they impose can be reversed by adopting a healthier one.”
Our capacity for aerobic exercise is reduced when our mitochondria are damaged,11 but, on the other hand, exercise can actually gee-up slow mitochondria,12 at least in people with diabetes.
These are not the only risk factors that are under our control. One study in 2009,13 and others since, have estimated that the disease burden in people with HIV with undetectable viral loads could be halved if people maintained a healthy weight; controlled their carbohydrate intake and avoided diabetes; had their blood pressure monitored and took medication if it was too high; avoided hepatitis C and were vaccinated against hepatitis B; and stopped smoking. These measures would make even more difference in the over-50s.
So that’s what your doctor would prescribe. But what can you do if you’re the patient?
David is 67, a retired antiques dealer. He has had health scares, and he thinks that people like him need to monitor their health more closely than HIV-negative people might – and to learn how to get what they want out of the NHS.
“I do believe that people with HIV may present with diseases of ageing in advance of others: I think our health is often a little ‘off-colour’, he says. “I also think however that older people with HIV, far from being vigilant, may present with symptoms later, because they think, ‘It’s just HIV’.”
In his case, anal screening had established he had AIN stage 2 – anal intraepithelial neoplasia, a change in the cells lining the anus that may, if left unchecked, develop into cancer.
“I felt things weren’t right down there,” he says. “The pathologist scheduled me for a biopsy but told no one he was on leave and further appointments kept being cancelled. Eventually, when I insisted on an appointment and was seen, they told me I’d have to have immediate surgery and radio- and chemotherapy.
“I phoned one of the HIV consultants who in turn got me to talk to a cancer specialist at another hospital who said ‘Don’t be ridiculous, we can manage this’.” David didn’t have to have surgery.
Conversely, he says, he’s sometimes had to insist on medical intervention. “I’ve had skin cancer before and a few years ago I was getting a one-sided headache and a feeling I had persistent sunburn. I took it to the on-call registrar at my HIV clinic and she said ‘Yes, it’s basal cell carcinoma [the most common form of skin cancer], and we’ll see you in two months’. I said ‘If this is cancer, get it out of me now!’.”
The key, he says, is “always to get a second opinion”. He doesn’t mean by this to set doctors against each other – unless necessary – but, for instance, to get checked out regularly by your GP too.
“I see my GP practice every three months or so. You can nominate which doctor you want to see. GPs will do things that HIV clinics don’t – such as automatically check your blood pressure.”
Mike Youle agrees with this. “I took a long time to engage with GPs, but HIV clinics won’t be able to do everything for older HIV patients.”
He also thinks all HIV clinics should be setting up age clinics, along the lines of London’s Chelsea and Westminster Hospital, which already runs a specialist age and HIV clinic.
David says: “There should be a standard set of good-practice guidelines on what to do for older HIV patients, with a user-friendly version for patients. And there should be a special appointment at the HIV clinic when someone is 50, and maybe every five to ten years thereafter, to do a comprehensive ‘MOT’ and check for anything likely to cause trouble.”
To be really comprehensive, a health MOT would also need to include psychological and cognitive tests. David thinks the psychological and socioeconomic situation of many older people with HIV is crucial to their health.
Studies show that there is an association between high cholesterol and Alzheimer’s disease,14 and that diabetes and Alzheimer’s may be caused by similar metabolic disturbances, to which HIV may add its own kind of impairment. But David feels a lot of ill-health has social and psychological causes. “There are a lot of isolated, mildly depressed older people out there – especially men – who don’t look after themselves and for whom life has little to offer.”
There’s even research that shows that depression and anxiety may have a direct effect on genes that control ageing - and levels of depression in older people with HIV are scandalously high.
Recently, a study in San Diego, California, compared old with young and HIV positive with negative, in a group of 179 locals.15 It got them to complete separate questionnaires on how easy they found it to deal with tasks of daily life, and assessed their overall emotional quality of life and their burden of diseases common in older people.
It found that daily functioning was worse in people with HIV, especially older people, and that HIV had a stronger effect on ability to carry out daily tasks than age. But the only factor in the HIV-positive over-50s that predicted poorer functioning in every domain, especially compared with HIV-positive under-40s, was major depressive disorder, sometimes called ‘clinical depression’.
That means depression strong enough to stop you getting out of bed. The prevalence of current major depression in the HIV-negative participants, regardless of age, was 2.3%. In HIV-positive people over 50 it was ten times as common – 24.5%.
This is of particular concern because it does not reflect the experience of most people as they age. Older people are generally happier people. In 2010, a study in New York asked nearly 350,000 18- to 85-year olds how stressed, angry, worried, sad or happy they were.16 The peak age for being happy was 70, and the peak age for overall wellbeing was 85; perhaps the only reason it wasn’t older is because that’s where the survey stopped. Other research shows that the patterns holds true for western and eastern Europe, Latin America and Asia.17
There is also research – among HIV-negative people – that indicates a direct link between emotional upset and length of life.18 Not because it makes people smoke or drink or kill themselves, but because stress directly harms genetic material that protects us against the effects of ageing.
Given levels of depression as high as those seen in the San Diego study, it could mean that a large portion of the reduced life expectancy seen in people with HIV can be directly laid at the door of isolation, stigma, shame and worry. And the key to a longer life might be to make friends, stay proud, fight stigma and stay calm.
Mike Youle says: “It’s a cultural thing, operating at several levels. One is that older people feel on the shelf generally: the best thing you can do for them is offer the chance to work. Secondly, there’s not been a place for retired men to go to. The Women’s Royal Voluntary Service is now actually doing some work with older single men and how to engage them... Thirdly, there’s never been any model for how you age gracefully as a gay man, not even in the pre-HIV days.”
One thing he’d like to see, he says, “is one of the best things I think the Terrence Higgins Trust ever did – buddying. This time, not for people with AIDS, but for older people with HIV.”
John might be an example to follow. The 70-year-old retired lecturer in earth sciences has regrets, in particular the loss of his beloved partner of 25 years, Nick, who died of AIDS in 1993, and that he has not found another to be with in later life.
In other ways, however, his life is very full. “I love London and would not want to move out of it, even though most of my friends have,” he says. But he maintains a group of friends, gay and straight, men and women, and visits one nearly every weekend.
He also has his weekly exercise workout. “Every Thursday I go to Heaven gay disco in London and dance for a couple of hours. It keeps me fit and I’m surrounded by 20 year-olds who are nice and friendly; I have been with younger people most of my working life and I’m sure this helps me keep a youthful outlook.” Having said that, realising dancing didn’t exercise his upper body, he’s just bought a set of dumbbells.
He is very concerned about his diet, not in a faddish way, though he does worry about the constantly changing dietary advice. “But I do always cook myself a proper meal in the evening and will have a large glass of single malt Scotch whisky – never more – to speed me along while I’m doing it.”
Like David, he believes in the value of getting second opinions and questioning medical decisions. He has reason to: he has multi-class drug resistance and lipodystrophy, and had lactic acidosis that nearly killed him, partly because doctors attributed all the acute symptoms he was suffering from to one drug, nevirapine, when in fact most were caused by another, ddI. John’s health picked up when he decided to follow his original “wonderful” HIV doctor to his new clinic.
“Doctors, and especially GPs, don’t pick things up,” he says. “You have to push things in front of them”. Like David, he sees a GP practice where there are two nominated doctors he chooses to see.
Also like David, he’s had more problems with inexperienced staff. “I went [to my HIV clinic] and my regular doctor wasn’t there. I saw a registrar who said ‘Your results are fine’, implying I could leave, but when I asked what my viral load actually was, it was 220. I said ‘Excuse me, it’s supposed to be under 50!’ and demanded another test. This was in fact the first sign of my drugs failing, as subsequent tests showed higher viral loads. I’m now on a new regimen which I’m pleased to say is working well.”
He keeps himself mentally alert, saying “I read The Economist rather than sit there doing Sudoku.
“I think staying positive and surrounding yourself with people who like you is the key,” he concludes, “and especially retaining an interest in helping others. Some older people get very self-absorbed. I think every time you take an interest in someone else, it prolongs your own life. Ask not what they can do for older people like you, but what an older person like you can do for them.”
