News

HIV: where are we now?

22 November 2021

Journalist Juliette Astrup explores the latest in the global fight against HIV and AIDS, from modern treatments and the impact of Covid-19 on the HIV-positive population to tackling the ongoing stigma still associated with the virus.

Four decades on from the first recorded death from AIDS in the UK, a virus that was once a terrifying death sentence is now well understood, easily tested for, preventable, treatable and in decline in this country.

Today’s antiretroviral treatments, which can be as straightforward as taking a single pill a day, are now so effective that someone with HIV can expect to live a normal lifespan. Not only that, but with successful treatment that person cannot pass the virus on – either to a sexual partner or anyone else – once the viral load is undetectable in their blood. As HIV charities such as the Terrence Higgins Trust have put it, undetectable equals untransmissible, or U=U. But that’s not to say that this still potentially deadly virus is consigned to the history books – far from it.

The UK is making huge headway in the fight against HIV. In 2019, the country met the Joint United Nations Programme on HIV/AIDS (UNAIDS) ‘90-90-90’ target for the third consecutive year, with 94% of HIV-positive people diagnosed, 98% of those on treatment and 97% of those on treatment having an undetectable viral load (Public Health England, 2020).

There has also been the roll-out of pre-exposure prophylaxis (PrEP), medication taken by HIV-negative people before and after sex that reduce the risk of contracting the virus. PrEP is available in sexual health clinics in Scotland and Wales and has been available through the NHS across England since October 2020.

The latest research has found that in England the number of HIV-positive people unaware they have the virus has halved in recent years (Presanis et al, 2021).

But although new diagnoses have been dropping since a peak in 2005, there are still just over 105,000 people with HIV in the UK, according to the most recent estimate. Of these, around 6600 are undiagnosed (Terrence Higgins Trust, 2020).

Worldwide, an estimated 1.5 million acquired the infection in 2020, resulting in a total of 37.7 million people with HIV (WHO, 2021). Of the total, 16% were unaware they had it (US Government, 2021).

HIV remains at epidemic proportions in sub-Saharan Africa, where the WHO is now seeking to avert a worst-case scenario of half a million excess HIV-related deaths and an increase in infections following service disruptions during Covid-19 and a slowing public health response to HIV (WHO, 2021).

Covid and HIV

The Covid-19 pandemic has undoubtedly taken its toll, dealing a double blow to people with HIV by presenting a greater threat to their health and affecting essential services.

As with research from elsewhere around the world, UK studies have shown that, when adjusted for age, patients with HIV are more likely to die from Covid-19 (Brown et al, 2021; Bhaskaran et al, 2021; Geretti et al, 2020).

Professor Caroline Sabin, vice-chair of the British HIV Association (BHIVA), also recently performed a study (Sabin, 2021) on the effects of Covid-19 on people with HIV. ‘This looked at the association with CD4 count [a count of a type of white blood cell that gives an indication of the health of the immune system] and viral load,’ she says.

‘We have started to see a picture of increased risk for people with HIV, not only because they tend to come from ethnic minority groups, have more obesity and comorbidities than the general population, but also because of immunosuppression – where their current CD4 count is low, such as in people who have recently been diagnosed,’ she adds.

Lockdowns and other restrictions have badly disrupted HIV testing in some parts of the world, leading to steep drops in diagnoses, referrals to care services and treatment initiations, according to a new UNAIDS report. For example,

HIV testing in KwaZulu-Natal in South Africa dropped by 48% after the first national lockdown (UNAIDS, 2021a).

The pandemic’s effect on services

Services were also affected in the UK, but not nearly to that extent. Caroline led the BHIVA’s research in June 2020, which surveyed people with HIV about their experiences of Covid-19. This was at a time when ‘almost overnight, HIV clinics and face-to-face services had to close and there was a rapid switch to virtual appointments’, she says.

‘The majority of [the 305] respondents found it harder to get appointments or experienced no change – only a small minority found it easier,’ Caroline says. ‘Thirteen per cent had appointments cancelled, and more than a third said they’d had other health scans and tests cancelled. The frequency of monitoring of people with HIV was cut down where clinicians felt certain tests could be safely delayed.

Worldwide, An estimated 1.5 million people acquired the infection in 2020, resulting in a total of 37.7 million people with HIV. of these, 16% were unaware they had it

‘Most respondents said they didn’t have a problem receiving medication and were taking it without any problems – but we must also consider that the survey population was self-selected, and those with the worst problems might not have responded.

‘Importantly, almost 10% said they would struggle having a phone conversation with a clinician about their HIV in their current accommodation, perhaps feeling comfortable about being overheard, while 4.6% didn’t have the devices and data they needed to allow them to access virtual services.’

Concerns remain about a potential longer-term impact. Caroline explains: ‘There are so many reasons why the HIV population might struggle to access services. HIV clinics on the whole provide an environment where people with HIV generally feel comfortable and safe – this may not be the case for other healthcare services.

‘For example, many people with HIV have not disclosed their status to their GP because of concerns around confidentiality. The population also includes many people from an ethnic minority group and/or those who are immigrants to the country, who may struggle to access healthcare services.

‘Yes, compared with many other countries, the UK’s HIV population generally experiences excellent outcomes. But we’ve had to work to develop services that meet the needs of people with HIV that they can access and feel comfortable with.

‘We know many HIV clinicians were redeployed very rapidly to deal with Covid and were not able to see people with HIV. As clinics are now getting back to normal, there are still concerns about the longer-term impact of the past 18 months on people’s health outcomes, and that is something that researchers are now actively studying.’

Caroline adds: ‘We expect, as with other sexually transmitted infections, following an initial lull in new diagnoses following a reduction in HIV testing, rates will now pick up for HIV as well.’

Services for children

Another recent UNAIDS report highlighted the plight of HIV-positive children. Almost half of the 1.7 million children with HIV worldwide were not having treatment in 2020, a year when 150,000 children were newly infected with the virus (UNAIDS, 2021b).

 

Moreover, children are nearly 40% less likely than adults to be on life-saving treatment, therefore accounting for a disproportionate number of deaths. Children account for 15% of all AIDS-related deaths despite representing just 5% of HIV infections (UNAIDS, 2021b).

In 2020, the number of children receiving treatment declined for the first time, showing that opportunities to diagnose children at an early stage are being missed. Research found more than one third of children born to HIV-positive mothers were not tested – even though around half of children with HIV die before their second birthday if left untreated (UNAIDS, 2021b).

Again, the picture in the UK is very different. Access to treatment and prevention means that HIV is rarely transmitted from mother to child in the UK, explains Abi Carter, participation manager at the Children’s HIV Association (CHIVA). ‘Antenatal testing is a real success story, so much so only one or two babies now born in the UK each year with HIV, perhaps where a mother has not been tested, HIV may have been acquired during pregnancy or where wider social complexities have affected engagement with care,’ she says.

‘Ideally, women with HIV who are pregnant or planning a pregnancy will be supported by their HIV consultant and a specialist midwife, but it varies according to where you live,’ Abi says. ‘In bigger communities with larger HIV services, women are more likely to get access to specialist care and advocacy around breastfeeding and vaginal delivery – both of which are options if their viral load is being closely monitored by their consultant and they are well supported with adhering to their medicine throughout pregnancy. But elsewhere, without access to those services, there can sometimes be misunderstanding and stigma in primary health care settings.’

Nearly 500 under-18s have HIV in the UK, and almost 1400 have transferred into adult care having grown up with a diagnosis (Collaborative HIV Paediatric Study, 2021). Every effort was made to maintain good services during the pandemic for this small but significant group.

Abi says: ‘Most families have close bonds with their children’s healthcare teams, and we know that those teams went above and beyond during the pandemic to keep in close touch with their families over the phone or via videocall if they weren’t being seen in clinic. In London some hospitals didn’t shut their clinics at all, making the case that it was really important to still see patients.

‘Some people were fearful about going into hospital during the pandemic, and telemedicine didn’t really work well for children and young people who felt like they might be overheard or felt shy on camera. But as soon as they could safely resume clinics they did.’

Tackling stigma and improving understanding

Despite massive leaps forward, stigmas around HIV/AIDS are still shockingly prevalent. A 2019 poll commissioned by leading HIV and sexual health charity the Terrence Higgins Trust found just under one in five (19%) people in the UK are aware that HIV-positive people on effective treatment can’t pass it on, while 41% believe everyone with HIV can pass on the virus.

The survey also found 38% of the 2075 people surveyed would feel uncomfortable going on a date with someone who is HIV positive (Terrence Higgins Trust, 2019). Meanwhile recent research by the National Aids Trust found that only a third of the public said they have sympathy for people with HIV, regardless of how they acquired it (National Aids Trust, 2021).

Ceri Evans, president of the Society of Sexual Health Advisers (part of Unite), says: ‘I’ve been doing this for 30 years, and over that time the situation with HIV has changed enormously. Back in the 1980s, the stigma was horrendous – people who were diagnosed were dying, and there was no treatment available. Now it is a completely treatable infection, and people receiving HIV treatment can expect to live an ordinary lifespan.

‘But although HIV has become more normalised generally, the stigma depends on your circumstances – your sexuality, your culture, your family, your religion. There are those who don’t want to tell their family and friends because they’re worried about being judged and feel very scared about that information getting out because the stigma is still there. In fact, anything that relates to sex often comes laden with guilt and anxiety, even though that shouldn’t be the case.’

Greater understanding and better education around HIV is still needed in schools, where school nurses can play a big part

What you can do

Like all healthcare professionals, community practitioners have a role in sharing accurate information and tackling ongoing stigma. They should be able to address sexual health with service users but need to ensure they’re equipped with the right information, says Ceri. ‘It’s about being appropriate. You expect to talk about your sex life in a sexual health clinic, but that might feel shocking or upsetting in another healthcare context.

‘Sexual health does leak into other areas of life, but It’s important to explain why you’re posing the question. And you need to ensure you know what to do with the answers: be ready with information about services and pathways for someone who is worried about the sex they’re having.

‘Sexual health clinics work in a very multidisciplinary way with other services, in particular school nurses and GPs, so it’s definitely worth building up a relationship with your local clinic and understanding the support on offer.’

Greater understanding and better education around HIV is still needed in schools, where school nurses can play a big part, says Abi. ‘We have created guidance for schools around HIV education to help them understand how to respond if a child with HIV attends their school. We have had situations in the past where a school has found out and overreacted, or even excluded a child. CHIVA can offer support to both schools and families in these situations.

‘We know globally that HIV is the biggest killer of teenagers after road accidents, which is driven by the situation in sub-Saharan Africa where the HIV epidemic is growing in the child and adolescent populations. While in the UK it isn’t nearly as dramatic as that, any transmission could be prevented with better knowledge and a more open dialogue about HIV in sexual health sessions and PSHE [personal, social and health education].’

The fight against HIV/AIDS has come a long way in 40 years, but it is still far from being won. The theme for this year’s World AIDS Day on 1 December, ‘Global solidarity, shared responsibility’, reminds us that this fight is a global effort and continuing to raise awareness remains vital. 


Resources

  •  British HIV Association bhiva.org
  •  Children’s HIV Association, including guidance for schools chiva.org.uk
  •  4M Mentor Mothers – peer mentoring for migrant women with HIV in the UK 4mmm.org
  •  Sophia Forum – an advocacy and campaigning group for women with HIV sophiaforum.net
  •  Terrence Higgins Trust tht.org.uk

References:

Bhaskaran et al. (2021) HIV infection and COVID-19 death: a population-based cohort analysis of UK primary care data and linked national death registrations within the OpenSAFELY platform. The Lancet HIV, 8: e24-e32. See: doi.org/10.1016/S2352-3018(20)30305-2 (accessed 5 October 2021).

Brown et al. (2021) COVID-19 mortality among people with diagnosed HIV compared to those without during the first wave of the COVID-19 pandemic in England. HIV Med 2021 Sep 15. See: pubmed.ncbi.nlm.nih.gov/34528739/ (accessed 5 October 2021).

Collaborative HIV Paediatric Study. (2021) Summary data to the end of March 2021. See: chipscohort.ac.uk/patients/summary-data/ (accessed 5 October 2021).

Geretti et al. (2020) Outcomes of COVID-19 related hospitalization among people with HIV in the ISARIC WHO Clinical Characterization Protocol (UK): a prospective observational study. Clinical Infectious Diseases, ciaa1605. See: doi.org/10.1093/cid/ciaa1605 (accessed 5 October 2021).

National AIDS Trust (2021) About our campaign this year. See: worldaidsday.org/campaign/ (accessed 05 October 2021).

Presanis et al. (2021) Trends in undiagnosed HIV prevalence in England and implications for eliminating HIV transmission by 2030: an evidence synthesis model. The Lancet Public Health. See: thelancet.com/journals/lanpub/article/PIIS2468-2667(21)00142-0/fulltext (accessed 5 October 2021).

Public Health England. (2020) Trends in HIV testing, new diagnoses and people receiving HIV-related care in the United Kingdom: data to the end of December 2019. Health Protection Report, Volume 14, Number 20. See: assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/939478/hpr2020_hiv19.pdf (accessed 5 October 2021).

Sabin C. (2021) Coronavirus (COVID)-19 in people with HIV in the UK: initial findings from the BHIVA COVID-19 Registry. BHIVA Annual Conference 2021, Oral Research Presentations, Session 2. See: bhiva.org/AnnualConference2021Presentations (accessed 5 October 2021).

Terrence Higgins Trust (2020) HIV Statistics. See: tht.org.uk/hiv-and-sexual-health/about-hiv/hiv-statistics (accessed 5 October 2021).

Terrence Higgins Trust (2019) Almost half of Brits would feel uncomfortable kissing someone with HIV. See: tht.org.uk/news/almost-half-brits-would-feel-uncomfortable-kissing-someone-hiv (accessed 5 October 2021).

UNAIDS. (2021a) UNAIDS global AIDS update 2021: confronting inequalities. See: unaids.org/en/resources/documents/2021/2021-global-aids-update (accessed 5 October 2021).

UNAIDS. (2021b) Start Free, Stay Free, AIDS Free - Final report on 2020 targets. See: unaids.org/en/resources/documents/2021/start-free-stay-free-aids-free-final-report-on-2020-targets (accessed 05 October 2021).

US Government. (2021) The Global HIV/AIDS Epidemic. See: hiv.gov/federal-response/pepfar-global-aids/global-hiv-aids-overview (accessed 8 October 2021)

WHO (2021) HIV/AIDS Key Facts. See: www.who.int/news-room/fact-sheets/detail/hiv-aids. (accessed 5 October 2021).

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