Lingering stigma and barriers: UK at risk of missing goal to end HIV transmission by 2030
“The biggest barrier to testing will always be people who don’t think that they are at risk." The first part of a special report by Rachel Howarth into HIV in the UK.
Doubts have been raised over a pledge to end transmission of HIV in the UK by 2030 by the UK’s leading sexual health care organisation.
Speaking exclusively to The Lead, one healthcare expert for the British Association for Sexual Health and HIV (BASHH) cited a steadily increasing number of new cases and believes the target may no longer be achievable - unless positive action is taken.
“There are so many barriers,” Dr Elizabeth Okecha said. “And we are only five years away - things seem to be getting worse currently so there’s a lot to do.”
In 2019, the then-Conservative Government made a pledge to end all new transmissions in the UK by 2030, an ambitious target which sparked a watershed report from the HIV Commission detailing the action that must be taken for this to be achieved.
As part of the report, it was recommended that everyone get tested for HIV when blood is taken in a medical setting for any reason and that testing be undertaken on an ‘opt-out rather than opt-in’ basis.
Concerns were raised at the time by HIV charities such as Terrence Higgins Trust (THT) about the lack of availability of PrEP (Pre-Exposure Prophylaxsis) – a medication which, if taken daily by a HIV negative person, can reduce the risk of acquiring the virus by 99%.
It was also recommended that the Government adopt an ‘interim milestone’ of an 80% reduction in cases by 2025.
Now, several years on from the landmark pledge, the most recent statistics released by the UK Health Security Agency (UKHSA) show a marked increase in cases rather than a decline.
In 2023, 6,402 new cases were diagnosed - a 46% increase on 2022 when there were 4,379 diagnoses.
Almost half (49%) of all new diagnoses in England were among people exposed through sex between men and women, with 29% among men who have sex with men.
While some of the cases can be attributed to the expansion of opt-out testing in some A&E departments, in very high prevalence areas such as London, Manchester, Brighton and Blackpool, others cannot be explained by increased testing - as rates have not fully returned to pre-Covid levels.
The continued stigma is not only an issue in terms of patient outcomes, with those diagnosed late 10 times more likely to die within a year than those diagnosed promptly - according to UKHSA statistics, but it also poses a threat to the Government’s 2030 target.
In recent weeks, Sir Keir Starmer has doubled down on the pledge to end transmissions, despite concerns being publicly raised about the target’s achievability.
On November 29, 2024, just two days before World AIDS Day, the Labour Government pledged a further £37 million to go towards increasing access to vital sexual and reproductive health services and ‘support for vulnerable and marginalised people across the globe’.
Amanda Pritchard, NHS Chief Executive, said: “Opt-out testing in NHS emergency departments is detecting thousands of cases of HIV and Hepatitis B and C that may otherwise not get picked up – incredible efforts from NHS staff and partners to set up this hugely important programme mean that this testing can happen and that patients can be referred for treatment which in many cases can save their lives.
“This funding will mean even more people can be tested and treated in towns and cities across England, as we work with the government, campaigners and partners towards the goal of ending all new HIV transmission, and the elimination of hepatitis C as a public health issue by 2030.”
Lingering stigma
With only five years now to go, and a steadily increasing number of new cases, Dr Elizabeth Okecha of BASHH is concerned that the target may no longer be achievable without a major overhaul to current attitudes.
For Dr Elizabeth Okecha of the British Association for Sexual Health and HIV (BASHH), the increase highlights a lingering stigma surrounding HIV, both among the general public and within the UK healthcare system.
The consultant, who also chairs BASHH’s special interest group for HIV and blood borne viruses, treats people living with HIV and is actively working outside of her clinical role to make other professionals in the NHS aware of advancements in both prevention and treatment in a bid to reduce new diagnosis, late diagnoses and ongoing transmission.
“We are tending to find that there are a lot of missed opportunities for testing,” she said. “Some people just may not access healthcare - but that’s the minority.
“In the majority of cases, especially of late diagnosis, they may have gone to A&E with an illness, to their GP, but no one has thought to test for HIV.”
Late HIV diagnosis occurs when CD4 cells have fallen to below 350 cells per microlitre of blood. This means that significant damage has already been done to the immune system and patients may already be experiencing repeat infections and feeling poorly for extended periods of time.
AIDS is diagnosed when CD4 cells fall below 200 and an opportunistic infection, such as Pneumocystis Pneumonia (PCP) or another AIDS-related illness, is present.
Despite modern medications and testing drives from high profile charities such as Terrence Higgins Trust and George House Trust, there were 775 HIV-related deaths in the UK in 2023.
Dr Okecha added: “Sometimes someone has had a barrage of tests done but the patient doesn’t necessarily feel comfortable talking about their sexual health - and sometimes the healthcare professional just doesn’t ask the questions.
“It could be a woman in a long-term relationship and HIV isn’t considered, but they will test the gay man sitting in the waiting room. Healthcare professionals might completely miss things such as HIV, syphilis and other viruses due to prejudices.”
And cases are increasing in women, with figures showing a 30% uptick in diagnoses in the past year. In contrast, only 65% of women attending sexual health services accepted an HIV test when offered - this is considerably lower than the percentage of men who have sex with men (90%) and heterosexual men (over 80%).
Emma Cole, who was diagnosed when 22 with HIV, is of the view that this is a demographic which needs to be aware that it remains at risk of HIV, despite modern day treatments.
“You may have no idea what your partner is doing,” she said. “Women in long term relationships may not even think of getting tested.
“A lot of the symptoms are similar to that of the menopause too, so sometimes it is just put down to that - night sweats are one of them.”
Dr Okecha also highlighted the risk to women, a group who make up over half (53%) of those living with HIV globally.
“The forgotten population are women living with HIV,” she said. “Men get it and men get tested. But if a woman is in a long-term relationship and HIV gets introduced, she might not perceive herself as being at risk and as a result may refuse a test - for example when accessing contraception via a sexual health service.
“The biggest barrier to testing will always be people who don’t think that they are at risk. People who know their status and are on treatment and undetectable don’t transmit it.”
Part of Dr Okecha’s mission through BASHH is to provide up to date training for the NHS on advancements such as U=U, which in short means undetectable equals untransmittable.
The U=U campaign, launched officially in 2016, focuses on the development in antiviral treatment meaning that once someone’s HIV viral load is undetectable through medication, they cannot transmit the virus to another person - a fact that is still relatively unheard of within the wider population.
This prevention method is deemed 100% effective when, like Emma, someone takes their medication daily.
“I have had some conversations with my medical friends who aren’t working in HIV and they ask what’s new in the field,” added Dr Okecha. “I talk about U=U and many of them have no idea about it. They’ve had no need to talk about HIV and many still have knowledge from 15 or 20 years ago.
“But this is common. I never thought in this way until I was trained in HIV - I probably only did four or five tests a year before that.”
Cases rising in arrivals from abroad and vaccine challenges
She adds that the UK will only see an end to new HIV cases if the virus is curbed overseas. In the UK in 2023, more than half of new diagnoses (53%) were among people who had previously been diagnosed abroad.
Dr Okecha said: “We have seen an increase in the number of people who are coming to the UK from countries with higher prevalence. But they are usually people who are already aware and already stable or on treatment.
“We have to think globally if we are to end transmission in the UK. What we don’t have is a cure - and if you look at vaccines there’s nothing that quite makes it to being used.
“There is a new form of PrEP that has shown promising results in Sub-Saharan Africa which is an injection every six months. It’s probably the closest thing to a vaccine. But that won’t be introduced to the NHS for years - in terms of things now we have to improve PrEP access.”
PrEP is a medication which can prevent HIV from entering the body and making copies within the immune system.
Only introduced widely in the NHS in 2020, it was initially trialled for three years from 2017 among those deemed to be at the highest risk of the virus. If taken daily, PrEP can reduce HIV transmission by 99%.
It is usually only given to those in higher risk communities, but Dr Okecha’s concerns stem from the difficulty the service has in reaching these people. While the medication is available to those who are able to attend a sexual health service, there are fears that some may not know of its existence due to proximity to a hospital or sexual health clinic, or a lack of access to healthcare in general.
Dr Okecha added: “You can’t get it from your GP, you can’t get it from your pharmacy. It would be great if other places were offering it.
“There will be eligible people who have never darkened our doorstep (at the sexual health clinic) for many reasons.
“We need to give people an opportunity to access these services. We need to get it closer to home for people and get prevention into the communities.”
Ultimately the message from both Dr Okecha and Emma echo this sentiment.
In 2025 it is time to put a stop to the stigma which creates barriers to testing and to getting people the treatment that they need not only for themselves, but to end one of the world’s most prevalent and deadly pandemics.
Emma, who gives educational talks on HIV in schools across the UK, said: “I had a pupil ask me, ‘aren’t you worried that you are going to hell?’ To have that thrown at me in 2024. It shows there is still stigma around. It might not be as bad as it used to be but you only need one incident like that to realise that there is still a lot of work to do.”
For Dr Okecha, doctors ‘pointing fingers’ at the public won’t solve the issue, as she believes there is still so much to do within the healthcare system.
However, she will continue to urge people to take responsibility for their own sexual health and test whenever they think there may be a need or when the opportunity arises in a healthcare setting.
“A negative result is just as important as a positive result,” she added. “We understand that people are scared. We can say ‘you can live a normal life’ until we are blue in the face but when someone gets that diagnosis their life does change.
“If you test early and it’s positive then that’s a better outcome and you can narrow down the amount of time partner notification will take - it doesn’t have to be a great big thing.
“If it’s negative it’s never a wasted test. The only way to know your status is to test.”
What is HIV?
HIV is a virus which attacks the immune system, evading elimination by the body’s own defenses and damaging its ability to fight off infections.
With early treatment, those diagnosed can live healthy lives, with life expectancy falling at around the same for those without HIV. But left to progress the virus will destroy CD4 cells, which are vital in maintaining immune function. Eventually, this results in AIDS-related illnesses.
Those on treatment now and who have achieved an undetectable viral load, where copies of the virus are very low in the blood, cannot transmit the disease to others. This is known as U=U or Undetectable equals Untransmittable.
In the UK, HIV is most commonly transmitted through vaginal or anal sex without a condom but it can also be spread by sharing needles or injecting equipment, vertically (mother to baby at birth), through breastfeeding and via contaminated blood products - although the latter has been eliminated in the UK since the screening of blood products began in 1985.
About the author: Rachel is an experienced journalist and editor who has worked for titles across the North West, and written on a freelance basis for several national titles. She is also a journalism lecturer at The University of Salford.
To start the year we ran a survey of readers asking which topics you wanted to see The Lead cover more of. Health came through very strongly within this. We’ll publish the second part of Rachel’s in-depth reporting on tackling HIV in the UK next week, where she speaks in detail to Emma Cole who has been living with the disease since she was diagnosed aged 22. She is now 55.
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