HIV update - 23rd January 2020

A round-up of the latest HIV news, for people living with HIV in the UK and beyond.

Big fall in new cases of HIV in the UK

Official figures released last week show dramatic progress in preventing HIV and slowing down the HIV epidemic in the UK. The research suggests that if current trends continue, there will be almost no HIV transmission happening in the UK by the year 2030.

New HIV diagnoses have been going down for several years. In 2018, 4453 people were diagnosed with HIV in the UK, a fall of 29% since 2014.

One thing to bear in mind is that figures for HIV diagnosis (which are the numbers we hear most often) don’t just reflect new cases of HIV transmission. Someone who is diagnosed this year may have had HIV for several years, so the numbers also reflect older infections. Changes in how frequently people are tested for HIV can affect the figures.

The true rate of new infections (which scientists call HIV incidence) is a more meaningful figure. It’s an estimate of the number of people who became HIV positive in a specific year, whether or not they got tested. It’s harder to calculate, which is why you don’t hear these figures so often.

In their latest report, Public Health England estimates that the true rate of new HIV infections in gay and bisexual men fell by 71% between 2012 and 2018. Only around 800 gay men acquired HIV in 2018. The rate has also fallen by 55% in heterosexual men and by 22% in women.

This shows that having a combination of HIV prevention methods is working. This includes condom use, regular HIV testing, HIV-positive people taking treatment, and PrEP.

The UK is already beating a set of targets that guide HIV policy around the world. One target is for at least 90% of people who have HIV to be diagnosed (in the UK the figure is 93%) and the next is for at least 90% of people with HIV to be taking treatment (here it is 97%). The third target is for over 90% of people taking treatment to have an undetectable viral load, which means that they can’t pass HIV on (our figure is 97%).

Experts believe these results are the key to the fall in HIV transmission in the UK. The prevention medication PrEP could make a big difference in the future, but not enough people are taking it yet.

Another impact of the scale-up of HIV treatment is even fewer HIV-related deaths. In fact, the official figures show that someone under the age of 60 who is diagnosed with HIV in good time is now less likely to die than other people in the general population of the same age, probably due to getting better medical care.

One in 840 people with HIV died in 2018, compared to one in 621 in the general population. This is a remarkable change from the worst years of AIDS when the annual death rate was more like one in five.

What did people mean when they said “I’m prepared to die to be cured of HIV”?

How willing are people to risk some kind of harm by taking part in research trials, if the positive outcome for them or other people might be a cure? An American survey published last year surprised many when it revealed that a sizeable minority of people said that if experts developed a promising treatment to cure HIV infection, they would take it even if its side effects meant a substantial risk of death. Some people – not many, but still some – said that they would take it if it meant a 100% risk of death.

All of which is counterintuitive and very puzzling. Why take a study drug that’s aimed at curing HIV if you might die when you take it? To find out, we need to know the reasons people gave for agreeing to take the treatment – what exactly were they thinking? A follow-up study involving a smaller and different group of people was set up to explore this.

The follow-up took a qualitative approach (exploring the more ‘human’ reasons why people do things) rather than the quantitative approach (which looks at questions of ‘how many’, ‘who’ and ‘what’ rather than ‘why’) of the first study. Specifically regarding HIV cure studies, we need to understand potential participants’ beliefs and values regarding the risks and benefits of potential HIV cure interventions.

Many interviewees expressed a profound longing for a cure. Sometimes this seemed to be driven by low expectations of HIV treatment continuing to work into the future or concerns about HIV stigma.

The study’s participants challenge the view that willingness to accept such extreme risks necessarily means that people do not understand the risks or are not providing well-thought-out answers. Many people considered themselves willing to take substantial risk (even to risk death) for an HIV cure, and that their reasons for doing so went far beyond how a cure would improve their own health. The driving reason was altruism, or, more specifically, a desire to do good for their community of people with HIV.

One person said: “You’re going to think I’m a nut. I would volunteer to be the one to die if 99 could be cured. Really…it’s human compassion.”

The study also shows that the question people hear is not always the question that researchers think they have asked. This is important because of its implications for giving informed consent to take part in a study – how can someone give informed consent to something they have not fully understood, perhaps because it was not asked clearly enough?

For more information, read NAM's pages 'The search for an HIV cure' and 'Thinking about joining a clinical trial'.

Cure or remission?

Another group of researchers warn that the language used to describe medical interventions may unduly influence people’s choices. As there is some misunderstanding, they raise the question of whether researchers should use the term ‘cure’ at all.

Scientists speak of two different types of HIV 'cure' that they can imagine. The first would be a sterilising cure, meaning that HIV is eradicated from the body.

The second – which may be more achievable – would be a 'functional cure' or 'medication-free remission', meaning that HIV is not eliminated from the body but is kept under control by the immune system without the need for ongoing treatment. HIV could not replicate or be transmitted.

The researchers described three hypothetical medications to people with HIV. Unsurprisingly, a sterilising cure was more popular than a functional cure.

The language used to describe a functional cure also mattered. A medication with the same effects was described in one example as a ‘cure’ and in another as ‘medicine-free remission’. It would be taken intravenously, required a hospital stay, might have side effects and had an 80% chance of success.

The researchers found that 81% of people wanted to take it if it was called a cure, reducing to 72% when it was called remission. But all the other details of the medication were the same.

For more information, read NAM's page 'Can HIV be cured?'

'Successful ageing' in women

A study has shown no differences in successful ageing between HIV-positive and HIV-negative older women. Generally, successful ageing is defined as having little or no disease, few physical or cognitive issues and active engagement with life.

The study was conducted in the US, comparing the experiences of 386 HIV-positive to 137 HIV-negative women. Different measures were used to enable the women (all aged 50 years or over) to self-rate their experiences of ageing. These measures gave a more individual and nuanced understanding of what it means to age well.

It was found that older women had more positive ageing experiences when they reported higher levels of social connections, positive outlook, spirituality and sense of self. Contrastingly, more negative experiences of ageing were linked to higher experiences of anxiety, depression, loneliness and having ever experienced discrimination.

An interesting fact about this study is that the similar ratings by HIV-positive and negative women were not expected. Also, the research focused on the experiences of older black women (74% were African American). It is thought that this is the first study of its kind, as previous studies have mainly involved male and white participants. Although there was no difference between HIV-positive and HIV-negative women, HIV-positive women generally fare less well than their HIV-positive male counterparts, in terms of health outcomes, access to care, adherence, viral suppression, quality of life, illness and death.

The number of older women with HIV in the US is steadily growing (due to new HIV diagnoses in older people and improved access to and options for anti-HIV medication), so it is important to gain a better understanding of their experiences. 

“These are important findings suggesting that high levels of self-reported successful ageing are achievable in older women living with HIV,” say the researchers.

For more information, read NAM's page 'HIV and the ageing process'.