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Berlin, Germany, and Brighton, United Kingdom
An advocate for the rights of people living with HIV, I work as a freelance writer/consultant on HIV-related issues. As a consultant, I work with: The Joint United Nations Programme on HIV/AIDS (UNAIDS); The Global Network of People living with HIV (GNP+); NAM (National AIDS Manual); and NAT (National AIDS Trust). As a journalist, I write for aidsmap.com and POZ magazine. For further information about me, and my work, please visit my website.

AGEING (DIS)GRACEFULLY

OK, so you’ve got a big gut, skinny legs and more lines on your face than Bob Hope had in his joke book. But is it the HIV drugs - or because you’re not young any more? Edwin J Bernard investigates.

HIV drugs may have saved many of our lives, but sometimes it seems like we’re not feeling - or looking - any better than in the pre-treatment era. It was probably naïve to think that a handful of pills was all it would take to remain young, healthy and gorgeous. And then there have been all the reports about the increased risks of heart disease, stroke, joint and bone problems, diabetes and cancers in people living with HIV. The question is though, how many of these increased risks are due to the drugs we are taking to stay alive, and how many due to simply living longer and ageing (dis)gracefully? And if it’s the latter, can you do anything about it?

Is it easier to blame the drugs?

James is so sick of the lipodystrophy issues that he’s faced in recent years, he’s decided to interrupt his therapy indefinitely. “It’s such a relief to get off the drugs,” he says. “Everyone seems to be sicker now on the drugs than before. I’m never going back on them.” Unfortunately, the elation James currently feels at not having to take antiretrovirals, which he associates with feeling sick, may not last long.

No one is suggesting that because there are things we can personally do to the reduce the risk, that it’s our fault if we suddenly keel over and die (that’s far too Louise Hay!). But might some of us be keener to stop taking our antiretrovirals because of the recent focus on their, admittedly scary, side effects than to take a look at the other things we do in our lives and make some changes? This would include things like stopping or cutting down on our smoking and use of recreational drugs; cutting down on alcohol intake; thinking about the kind of sex we are having and making sure we don’t get or pass on bugs that could cause future health problems; adjusting our diet so that we eat balanced and regularly, eating less saturated fat and refined sugars (and NOT doing Atkins!); and exercising in any way we enjoy more often.

Is HIV more toxic than the drugs?

Studies from both Spain and Thailand presented earlier this year at an Aids conference in Boston found that the only people who could possibly cope with a ‘drug holiday’ were people whose CD4 counts had never dropped below 200 and who were well above 350 when they stopped therapy. James had reached the scary double digits before increasing to the ‘safer point’ of 250, thanks to the HAART that reduced his viral load to undetectable and also gave him these debilitating side effects. But staying off therapy for a long time is really a danger to one’s health, and at some point, everyone in the Spanish and Thai studies needed to start therapy again. But James is not alone in his dilemma, as the realities of what it means to live longer with HIV have crept up and punched us in the face. Last year, a study in the American Journal of Medicine found that a majority of HIV positive Californians would be prepared to have their life expectancy shortened by over two years if it meant avoiding the disfigurement of lipodystrophy.

The question we have to continually ask ourselves is: are the drugs really more toxic than HIV itself? Every study looking at the impact of HAART on deaths in people with HIV has found that death rates have declined substantially due to the antiretrovirals we now take for granted in the UK. For example, the EuroSIDA study - which included over 7300 people with HIV throughout Europe - found that the death rate plummeted from 16 to three per 100 people per year between 1994 and 2001 due to the availability of HAART. The simple fact is that if we stop taking the drugs when our immune system is not in control of the virus our chances of dying sooner rather than later rise dramatically. A bitter pill to swallow, but at least we in the UK can choose what pills we take and how we live our lives.

‘If I went for a bacon sandwich, he’d slap me!’

Having the high blood lipids (fats) associated with many HIV drugs, for instance, is certainly a worrying thing to deal with. But last month, Anna Poppa suggested that the most significant thing you could do to reduce the risk of heart attacks and strokes was to stop smoking. In fact a group of experts in the US recently suggested focusing on lifestyle factors generally before demanding fat lowering medications from your doctor. Stopping smoking, changing your diet and exercise can all have a remarkable effect.

BJ was at death’s door eight years ago before taking a ritonavir-based drug regime that gave him his life back.

“But then I got a huge belly and my triglycerides and cholesterol went soaring”, he recalls. He was partial to bacon sandwiches and Sugar Puffs, but after seeing a dietician at St Mary’s in west London he changed to a low saturated fat and refined sugar diet. A test three months later showed that “all my blood fats had come down very quickly.” Having a supportive partner helped, says BJ “If I went for a bacon sandwich, he’d slap me!”

James is one of the growing number of people with HIV to be diagnosed with diabetes. A recent French study found that 10 per cent of patients on antiretrovirals had developed diabetes three years into treatment. But their age, and not their antiretrovirals, was the significant risk factor. A family history of diabetes and high blood sugar levels before starting therapy may also increase your chance of developing diabetes on HAART. Co-infection with hepatitis C may also be a risk factor.

The first step in getting blood sugar levels down to normal is to do the same as you would to avoid heart trouble: eat less refined sugar and saturated fat, and take more exercise. Experts suggest doing aerobic exercise (exercise that causes your heart rate to rise above normal levels) for at least 20 minutes each day. Examples include brisk walking, swimming, cycling, jogging or doing aerobics or other heart-healthy gym classes.

If diet and exercise aren’t enough to normalise blood sugar levels, and it’s not possible to switch drugs in your HAART regime to avoid whatever is causing the glucose elevation, then drug treatment may be necessary. But even if you start diabetes treatment, diet and exercise changes are always recommended by experts because these can still help in lowering your blood sugar.

Osteoporosis: a pain in the neck...and elsewhere

How is it that a condition previously only seen in post-menopausal women is now affecting people with HIV? Osteoporosis has been reported in three to 20 per cent of people with HIV, depending on the definition you use. BJ has been suffering from pains in his legs, knees and hips for the past six months. This could be osteoporosis - which is caused by a lack of bone calcium and protein and is commonly referred to as ‘thinning of the bones’, or another bone disorder called osteonecrosis - literally ‘bone death’ - that is caused by poor blood supply to an area of bone.

The evidence from studies so far appears to show that HAART is not strongly associated with these bone disorders, whereas length of HIV infection and nutritional status do appear to be important. As with many of the other health problems affecting people with HIV, HIV itself is just one more additional risk factor on top of the usual ones seen in people without HIV which include: a family history of bone disorders, low calcium intake, smoking, and a sedentary lifestyle (ie - yet again - not exercising enough!).

Healthy mind, healthier body

Then there’s what was always one of the most frightening manifestations of Aids in the bad old days: dementia. HAART has been shown to improve the brain function of people with dementia, especially in particular drugs that cross the blood/brain barrier like AZT. But treatment does not appear to eradicate HIV dementia, or even prevent it from developing in the first place.

Of course, mental health symptoms may not have a neurological cause like dementia. Mental health problems can affect anybody, but it seems that people with HIV are more likely to experience some of them.

Depression is one of the most common forms of illness seen in people with HIV, affecting twice as many people as in the general population, not least because the groups most affected by HIV in the UK, gay men, refugees and migrants and drug users, are already more likely to have mental health problems.

One anti-HIV drug in particular has been linked with psychological disturbance, including suicidal thoughts. Last year, researchers in San Francisco General Hospital found a greater incidence of severe psychiatric illness resulting from HIV treatment with efavirenz (Sustiva) than had previously been reported, with 12 per cent of people on efavirenz experiencing depression (and almost three per cent suicidal depression) compared with only just over one per cent on nelfinavir. If you do have a history of depression and it hasn’t improved or has got worse since starting efavirenz, you should discuss with your doctor what other drugs might be suitable.

Cancer, HAART and HIV

Between 2000 and 2002, the most common cause of death at the UK’s largest HIV clinic, London’s Kobler Centre, was cancer: non-Hodgkin’s lymphoma (NHL) and non-AIDS-defining cancers (such as lung, testicular and anal cancer).

How does HAART affect cancer? Well, response to HAART appears to be a very important factor when it comes to doing well with non-Hodgkin’s lymphoma (NHL), according to a German study published earlier this year. It added to the body of evidence that although NHL is appearing relatively more often in the post-HAART era, HAART can still positively affect outcome.

The incidence of non-Aids-defining cancers in HIV positive patients is the subject of ongoing debate right now, but several studies have suggested that HIV positive patients have an increased incidence of cancers of the lip, lung, anus, penis and of Hodgkin’s disease (the other kind of lymphoma). The irony is that whilst HAART stops people from dying of HIV itself, since people are living longer they are now starting to get - and sometimes die from - the kind of cancers seen in the general population.

Living is the biggest single cause of death!

More and more diseases traditionally attributed “simply” to ageing have recently been linked with either genetic or viral factors. These include cancers, heart disease, stroke and diabetes, to name but a few.

Perhaps it’s no coincidence that the same illnesses are also ones associated with HAART. The longer HAART helps us live, the more likely we are to get sick with the kinds of illnesses that non-HIV infected people get.

Our lifestyle (our diet, smoking, exercise, drinking, sex and sunbathing habits, for example), our genetics (the susceptibility to disease we inherit from our parents), and whatever chronic viruses we carry - not only nasties like HIV and hep C but also more common and often asymptomatic ones like Epstein-Barr (the glandular fever virus), CMV and human papilloma virus (HPV) - combine to dictate the likelihood of our getting ill and dying the longer we live.

We can’t control our genetics (as yet), and if we already have these viruses we can’t usually become uninfected, but there are things we can do to attempt to turn back the ageing clock and reduce our chances of getting sick.