Professor Ian Everall, psychiatrist and neuropathologist at the University of Melbourne, on what being HIV positive can mean.
What have you noticed among patients from minority ethnic communities regarding the affect of stigmatisation on mental health?
Often if they come from small communities and think if they talk about things openly they’ll be outed in the community, then they [think they] can cope with it by just not speaking. That was my experience in London.
I ran an HIV mental health service at the Maudsley Hospital, London. There [were] a number of African women who came over as refugees whose stories were horrific in terms of the abuse they suffered, who found out they were HIV positive, and when asked by the local health authorities if they wanted support from members of their own community…all said no because “that person will then tell everyone else in the community and I’ll be ostracised”. I saw a guy who found out when he arrived [in the UK] that he had HIV, who told his wife, who replied, “well don’t bother coming back”, and then told the rest of the village.
Are suicidal inclinations more common among people with HIV than those without?
Yes, people go through a series of emotional responses, including thinking of possible ways of controlling the situation either by committing suicide or self-harming, through to issues of facing their own stigma or prejudice about themselves. Especially with gay men who have internalised homophobia – those who had difficulty accepting their sexuality may have more mental health issues in terms of coming to terms with the diagnosis.
Are some people more prone to risky behaviour that could lead to having HIV?
I think there’s an invisible population – people with pre-existing mental health issues who, because they’re bipolar or schizophrenic, behave in a way that they don’t understand, or they don’t think about the consequence of their actions. And we know that the rate of HIV infections with people with severe mental illness are higher. I’ve seen a number of individuals recently who’ve got schizophrenia.
Are patients more prone to risky behaviour, such as drug taking, after a diagnosis?
You do see that, but other people either don’t get into that or they pause and say getting the diagnosis made them get themselves together and think about what’s important to them.
And that’s people with pre-existing schizophrenia?
Yes – pre-existing mental health problems who may or may not be in contact with community mental health services. They can behave in ways that put themselves more at risk
How have things changed since combination therapy was introduced?
Before effective medication we used to see dementia and a high rate of mania, but not any more. What we worked out was that the part of the brain that suffered the most damage [from HIV] was the frontal cortex, which controls all your higher social processing and behaving in appropriate ways. So if you cause damage to that part of the brain, then people get disinhibited and behave in ways that are out of character. And we found that the excess of manic symptoms was often underlying cognitive impairment and if you can treat that with HAART [highly active antiretroviral therapy; anti-HIV medication] you can reverse it.
When left untreated HIV can replicate in the brain and cause damage to the connections between cells, the so-called dendrites and synapses.
What do we know about cognitive impairment?
I showed in the lab about 15 years ago that lithium protected nerve cells from damage due to HIV. We did a phase I clinical trial giving lithium [a mood stabiliser normally given to those with bipolar disorder] to 12 guys who had some form of cognitive impairment, and they all got better. Some asked to stay on the lithium after the trial. And now I have funding for a phase II clinic trial to look at is this as a treatment that can be given to people with mild cognitive impairment that they can take in addition to their antiretrovirals.
What sort of psychiatric side-effects are most common with HIV medication?
It’s mainly from the efavirenz [a commonly prescribed HIV drug in Britain] – that’s the one that’s most documented. People talk about vivid dreams, change in mood, sometimes a possibility that it was exacerbating a psychotic illness. But [these were] case-reported issues. In the majority of cases the side-effects go away, but if they become marked and cause distress, they can change regime.
So, your mental health after diagnosis is dependent on previous mental health as well as other factors?
Yes, if you don’t have a previous mental health problem and if you get on a good treatment at an appropriate time then things will look good. The other important factor is having roles in life – being in employment or being in a relationship, or having a supportive group of friends. These are protective factors.