HIV & AIDS in the UK

The UK has a relatively small HIV and AIDS epidemic in comparison with some parts of the world, with an estimated 83,000 people – or around 0.1% of the population – currently living with HIV.¹ While the number of people living with HIV in the UK is relatively low, it has increased dramatically since the 1990s, alongside a general rise in the prevalence of sexually transmitted infections.

AIDS & HIV in the UK - the current situation

A poster which was part of the early campaign by the British government to raise awareness of AIDS

Although AIDS gets less attention from the media in the UK than it did during the early history of the UK AIDS epidemic, it’s far from a problem of the past. In fact, the epidemic has expanded, with the annual rate of new HIV diagnoses more than doubling between 1999 and 2003, and peaking in 2005 at almost 8,000 diagnoses.² Annual diagnoses have slightly declined since then with 7300 people being diagnosed HIV-positive in 2008. HIV prevalence in the UK is relatively low and estimated at 0.1% of the population.³
The UK AIDS statistics show that at the end of 2008 there were an estimated 83,000 people living with HIV in the UK, of whom approximately 22,400 were unaware of their infection.⁴
Relatively low numbers of people in the UK have died from AIDS in recent years thanks to the availability of HAART (Highly Active Antiretroviral Therapy), which dramatically increases the life expectancy of people living with HIV. In 2007, around 540 HIV-infected persons died, compared to 1,726 in 1995, when antiretroviral treatment for HIV/AIDS was not available. The majority of AIDS related deaths occurred because people were diagnosed late and therefore did not start treatment early enough. In 2007, an estimated 31% of newly diagnosed, HIV-infected adults were diagnosed late.⁵
Although HIV is often perceived to be a ‘gay’ problem, infections acquired through heterosexual sex account for the largest number of HIV diagnoses in the UK. The majority of people who acquired HIV heterosexually were infected overseas but only became aware of their status after being tested in the UK. In terms of HIV infections actually occurring within the UK, gay men (and other men who have sex with men) accounted for two thirds of new cases.⁶
Despite the rising numbers of new HIV infections in the UK, public knowledge of HIV and AIDS appears to have declined. While 91% of people in the UK knew that HIV was transmitted through unprotected heterosexual sex in 2000, by 2007 this figure had fallen to 79%⁷.
Many UK HIV/AIDS organisations are calling for improved sexual health services. The Terrence Higgins Trust, for example, released a 2007 report stating that sexual health services in England remain woefully under prioritised and under funded. It claims that despite the government’s promise of an extra £300 million for sexual health services across the United Kingdom to modernise clinics and reduce waiting times, many GUM (Genitourinary Medicine) clinics remain cramped, out-of-date and understaffed⁸.

UK regions affected by HIV

In 2008, there were 6,727 HIV diagnoses in England, 331 in Scotland, 148 in Wales and 92 in Northern Ireland.⁹
London is the epicentre of the UK AIDS epidemic, accounting for around half of all HIV diagnoses in the UK. However, increasing numbers of diagnoses in England are being reported in areas outside the capital, including many places that were not previously associated with HIV. Yorkshire and The Humber, for example, saw an almost four-fold increase in the number annual diagnoses in 2008 compared to 2000. In Wales, Scotland, and Northern Ireland, HIV diagnoses have tended to rise year on year, although 2008 saw a decline in all countries other than Northern Ireland which saw the largest proportional increase.¹⁰

HIV transmission routes in the UK

Of all diagnoses to the end of June 2009, 44% resulted from sex between men, 44% from heterosexual sex, 5% from injecting drug use, 2% from mother-to-child transmission, 2% from blood/tissue transfer or blood factor, and 4% from other or undetermined routes.¹¹

Heterosexual sex

In 2008, half of all people diagnosed in the UK were infected through heterosexual sex, making this the single biggest exposure category. Of these people just 21% were, or possibly were, infected in the UK. The high rate of HIV amongst Africans in the UK reflects the severity of the AIDS epidemic in sub-Saharan Africa. In total, black Africans represented 36% of newly diagnosed infections in 2008.¹²
The increasing number of people infected with HIV through heterosexual sex means that the number of women with HIV is increasing. The male to female ratio of HIV diagnoses made before 1994 was more than 7 to 1, whereas in 2008 the ratio for new diagnoses was around 5 male to 3 female.¹³

Choose safer sex poster

HIV/AIDS and gay men in the UK

In 2007 the Health Protection Agency (HPA) announced that the number of newly diagnosed HIV infections amongst gay men had risen for the third successive year, to an all time high¹⁴. 2,433 men who have sex with men were diagnosed with HIV in the UK in 2008, representing one third of all new diagnoses that year.¹⁵ There are currently around 31,100 men who have sex with men living with HIV in the UK¹⁶.
Since HIV/AIDS treatment became available, the number of gay men dying from AIDS has fallen significantly. In fact the number of AIDS related deaths has decreased by 71% since 1997. The 170 AIDS related deaths amongst gay men represented 34% of all AIDS related deaths in the UK in 2006. The number of AIDS diagnoses was also low at 169 people, 69% of which were made at the same time as their HIV diagnosis¹⁷.

Injecting drug use

The level of HIV infection caused by injecting drug use is relatively low in the UK, with IDU prevalence in England and Wales in 2007 at 1.1%, including 3.9% in London. By the end of 2008 injecting drug users (IDUs) accounted for nearly 5% of HIV diagnoses ever reported in the UK. Around half of IDUs with newly diagnosed HIV were probably infected in the UK, with the rest probably having been infected in Southern and Eastern Europe.¹⁸
A lot of early media coverage of AIDS in the UK focused on injecting drug users. During the early Eighties it was a big problem, particularly in Scotland where areas such as Edinburgh and Dundee had a very high prevalence of HIV among IDUs. In 1986 needle exchanges began to operate all across the UK, providing clean needles and giving drug users access to information and support. These schemes were largely effective, and helped to substantially reduce the prevalence of HIV among IDUs in the nineties. From 1990 to 1996 prevalence among this group fell from nearly 6% to 0.6%, rising slightly around 2003 and remaining fairly stable since.¹⁹ Troublingly, infection levels appear to be rising among newer injectors, from 0.25% in 2002 to 1% in 2007.²⁰

Mother to child transmission of HIV in the UK

A high uptake of antenatal HIV testing and the availability of drugs to prevent mother to child transmission of HIV has led to a low level of HIV infections passed from mother to child in the UK. Only 1.3% of diagnosed HIV infections in 2008 were acquired through this HIV transmission route. There has been a total of 1,784 UK diagnoses of HIV in people who acquired the virus from their mothers including 847 who were born in the UK.²¹
View UK statistics by transmission route and gender

HIV and Africans in the UK

Africans in the UK are affected by HIV and AIDS to a far greater extent than other broadly defined ethnic groups. Between 1995 and 2008, Black Africans accounted for 42% of the UK’s total HIV diagnoses, of which the overwhelming majority were attributed to heterosexual sex.²²

UK AIDS awareness poster

There are a number of challenges facing African communities affected by HIV and AIDS in the UK. Late diagnosis is a particular problem with over 40% of new diagnoses occurring at a CD4 count below 200 cells/mm3. Late diagnosis greatly increases the risk of mortality, with Black Africans and Black Caribbean adults 13 times more likely to die within a year of a late diagnosis compared with one at a higher CD4 count.²³
To tackle this problem it has been suggested the UK could implement a community-based voluntary counselling and testing service offering rapid tests modelled on a similar service in Kenya. Respondents from a small focus group generally thought such a scheme could work. However, it was believed that a community-based service targeting Africans had the potential to exacerbate stigma and that it would not offer the same level of anonymity as a clinic.²⁴
It is estimated that 69% of HIV-infected black African and Caribbean people are receiving antiretroviral drugs.²⁵ However, many live with the threat of deportation to countries where they would not be guaranteed such treatment.²⁶ Stopping or interrupting treatment can cause HIV to replicate quicker and it may become resistant to therapy.

HIV/AIDS prevention in the UK

Men who have sex with men

Gay men are currently the focus of a number of HIV prevention campaigns in the UK. An important nationally coordinated campaign is CHAPS, which is funded by the Department of Health and run by a partnership of organisations, led by the Terrence Higgins Trust.
Another broad campaign is The London Gay Men’s HIV Prevention Partnership (LGMHPP) – a collaborative prevention effort implemented by AIDS-related organisations and funded by most London health authorities. Interventions include condom distribution, using media to promote prevention messages, newsletters and booklets, counselling and group work.
Despite campaigns to raise HIV awareness, there is evidence to suggest prevention efforts are insufficient. A study released in 2007 found that 18% of HIV-negative gay men had had unprotected anal intercourse with more than one partner during the previous year. Worryingly, this figure rose to 37% for gay men who were HIV-positive.²⁷

Africans in the UK

The National African HIV Prevention Programme (NAHIP) is a country-wide prevention campaign funded by the Department of Health. It is managed by the African HIV Policy Network and collaborates with a number of smaller organisations that aim to prevent HIV among African people in the UK.
Among NAHIP’s most prominent initiatives are the ‘Do It Right – Africans Making Healthy Choices’ campaign which provides information on sexual health, condoms, and where to access help. Its website features a series of soap opera-styled videos encouraging viewers to think about HIV, condom negotiation and testing.²⁸ The ‘Beyond Condoms’ campaign promotes debate among African communities about a wide range of issues regarding sexual health and ‘building a safer sex culture’. The campaign’s literature targets different religious groups and is available in five different languages.²⁹
It is important that any prevention work targeting African communities in the UK be supported by parallel activities that aim to reduce the problem of HIV-associated stigma and discrimination.³⁰ A 2006 study found that fear of discrimination is stopping some people of African origin from accessing HIV testing services for fear of community reaction if their result were to be positive.³¹ Encouraging HIV testing uptake is a key part of preventing onward transmission of HIV in all communities. If people know their status they are less likely to pass the virus to others.

Injecting drug users

Needle exchange symbol on window of Boots, a UK-based pharmacy.

Needle exchange services are run by hospitals, pharmacies, drug agencies and other organisations. While over 90% of current and former drug users in England, Wales and Northern Ireland have used a needle exchange service, campaigners argue that needle exchange provision in the UK is patchy, out of hours provision is poor and there are disparities in the availability of equipment.³² Risk taking among this group remains high. In 2007, 23% of injecting drug users in England, Wales and Northern Ireland reported sharing needles or syringes during the four weeks prior to a survey, down from around a third in the early part of the decade.³³
Doctors in the UK are permitted to prescribe methadone as a substitute for injected heroin. Through methadone substitution, users can also be helped to end their dependency on drugs.

HIV/AIDS education and awareness

HIV education is a vital component of HIV prevention strategies. Educating people about the HIV virus can help them to protect themselves and others, and can reduce the fear and stigma surrounding AIDS.
A 2008 UK survey of peoples’ attitudes to and knowledge of HIV conducted by the National AIDS Trust has found “serious gaps” in people’s knowledge about the virus. The study found that levels of understanding about HIV transmission in the UK have fallen significantly since the year 2000. It was found that in 2007, over 90 percent of the British public did not fully understand the ways that HIV is transmitted, with Scotland and London reportedly being the least knowledgeable regions.³⁴
Deborah Jack, Chief Executive of the National AIDS Trust, emphasises the need to educate the general UK public about HIV:

“Ignorance about HIV increases vulnerability to infection and also contributes to stigma and discrimination. The Government must re-invest in educating the public about HIV.”³⁵

HIV education in schools is one way to target young people with HIV prevention. In England and Wales, the government encourages secondary schools to teach pupils about HIV/AIDS as part of Sex and Relationships Education (SRE), although it is not a statutory subject on the national curriculum. Ofsted – an official body that regulates schools in England – reported in 2007 that:

Schools gave insufficient emphasis to teaching about HIV/AIDS. Despite the fact that it remains a significant health problem, pupils appear to be less concerned about HIV/AIDS than in the past.”³⁶

In Northern Ireland and Scotland, HIV/AIDS is not a compulsory part of school education either.
The Terrence Higgins Trust, amongst other organisations, believes that sex and relationships education should be a core part of the National Curriculum in the UK:

“The lack of good sex education means many young people are leaving school ignorant about HIV and safer sex. HIV is now the fastest growing serious health condition in the UK, and there is no cure. It’s time to get our facts straight.” - Nick Partridge, Chief Executive, THT³⁷

In response to such recommendations following an independent review, Personal, Social, Health and Economic (PSHE) education will be made compulsory at primary and secondary schools in the UK from 2011. The age at which parents are allowed to withdraw their children from sex and relationships education will also be reduced from 19 to 15. This means that all young people in the UK will be provided with some sex and relationships education before they leave school.³⁸

Prevention of mother-to-child transmission

The UK has been very successful at preventing mother-to-child transmission of HIV. All expectant mothers are offered an HIV test and uptake in 2008 was 95% resulting in at least 90% of infections being identified before delivery.³⁹
In the UK and Ireland, between 2000 (when screening was first rolled out) and 2006, the transmission rate from diagnosed women to their children was just 1.2%. Even lower transmission rates occurred when women took certain forms of antiretroviral therapy and with planned caesarean or vaginal delivery (as opposed to emergency or unplanned deliveries). This is taken as evidence of the effectiveness of providing choices about treatment and delivery mode in order to reduce MTCT. It also points to a need to achieve even greater levels of HIV testing in antenatal settings.⁴⁰

HIV testing in the UK

According to British guidelines, HIV testing should be offered at GUM clinics as part of routine STD screening, regardless of symptoms of disease or risk factors of infection. The guidelines state that everybody taking an HIV test should have a pre-test discussion, and be offered counselling if requested, or if there is a high risk of a positive result.⁴¹
The number of people being tested for HIV and other STDs at GUM clinics (where the majority of people are tested for HIV) has risen in recent years. Almost half of sexual health screens in 2003 included an HIV test; this proportion increased to two-thirds for England, Wales and Northern Ireland in 2006. Overall, around 950,000 had an HIV test in a GUM clinic in England, Wales and Northern Ireland in 2008.⁴²
Around two-thirds of MSM in England and Wales have taken an HIV test, a rate which, promisingly, is steadily rising year on year.⁴³

It can be difficult to treat someone with HIV if they are diagnosed late, and in some cases late diagnosis leads to death.

A major worry is that many people infected with HIV aren’t accessing testing services soon enough. It’s estimated that around one third of HIV-positive adults in the UK are diagnosed late, and for heterosexual men this figure rises to 44%.⁴⁴ It can be difficult to treat someone with HIV if they are diagnosed late, and in some cases late diagnosis leads to death. According to the British HIV Association (BHIVA), at least a quarter of deaths reported in HIV-positive people in the UK between 2004 and 2005 may have been avoided if HIV had been diagnosed at an earlier stage⁴⁵.
BHIVA, along with other experts, say that non-HIV clinicians such as General Practitioners (GPs) need to be made more aware of the importance of early diagnosis. They have also called for HIV testing to be made a routine part of more generic healthcare services that aren’t specialised towards HIV or sexual health⁴⁶. Introducing an opt-out testing policy (whereby everybody attending a GUM clinic is given an HIV test unless they specifically ask not to be tested) may be another way to reduce the number of people diagnosed late. Of previously undiagnosed HIV-infected heterosexual men and women attending GUM clinics in 2006, one quarter left the clinic unaware of their HIV infection in 2006⁴⁷.
There are also believed to be a significant number of undiagnosed infected children born to women with HIV. This issue garnered greater attention following the 2008 death of a 10 year-old, known as “SP”, who died within days a positive diagnosis. His parents had both been diagnosed HIV-positive six years earlier.⁴⁸
One audit of 297 HIV-positive women attending a GUM clinic found just 58 of their 217 children had received an HIV test. The main reasons for not testing were a perception that the child was well and therefore could not be infected; fear of disclosure; inability to cope; and fear of guilt.⁴⁹
The issue raises important questions regarding misconception and stigma of HIV, the level of support for families, the rights of the child and parents, and the stage at which social care and legal authorities become involved.

AIDS treatment in the UK

All legal UK residents are eligible for free HIV/ AIDS treatment from the NHS. The first antiretroviral drug to treat HIV became widely available in the UK in 1987. Since then, the availability of HIV treatment in the UK has greatly reduced the number of people who die from AIDS related illnesses, and has profoundly improved the quality of life of many people living with HIV.
However, individuals undergoing HAART have to take medication every day for the rest of their lives, and sometimes suffer severe HIV drugs side effects. It has also been found that resistance to antiretroviral treatment can occur, and since HAART is a relatively new form of treatment it is not known how long an individual can continue to benefit from it.

Other issues

Stigma and discrimination: People living with HIV may face prejudice as a result of their condition, and the social stigma surrounding AIDS  can stop people from discussing it. Ignorance of how HIV is transmitted can lead to dicrimination against people who have the virus.

George House Trust campaigners against HIV-related stigma and discrimination

HIV in prisons: In the past it has been found that prisoners in England and Wales are more likely to be infected with HIV than other members of the population, a problem driven by high-risk behaviour, particularly injecting drug use.⁵⁰ Campaigners argue that, despite a lack of recent data, this is probably still the case. The government has announced plans to provide disinfectant tablets to prisoners, which can be used to sterilise needles, although some campaigners argue that this does not go far enough and that needle exchanges should be introduced to prisons.⁵¹ AVERT.org has more information about prisons, prisoners and HIV/AIDS.
Criminal transmission of HIV: There have been several high profile cases in the UK of individuals being prosecuted for reckless transmission of HIV because they have failed to tell sexual partners about their condition. These cases generated a lot of debate about how the law should deal with this issue, and in 2008 the UK Crown Prosecution service released guidelines to clarify the law. As of 2008 a person can only be convicted of reckless sexual HIV transmission if there is “a sustained course of conduct during which the defendant ignores current scientific advice regarding the use of safeguards”. This implies that a single act of unprotected sex is not enough to constitute reckless behaviour. Reckless HIV transmission is only punishable in court if HIV is actually passed on and if the defendant is aware of their HIV status.⁵² The new legislation has been commended by various AIDS charities who have generally argued that it is right to prosecute people who deliberately pass on HIV, but that reckless transmission should not be criminalised. Promoting knowledge of status and safer sex are considered far more effective in preventing transmission, than prosecuting those who have transmitted the virus.⁵³
Migration and HIV in the UK: As nearly half of all new HIV diagnoses in the UK are amongst Africans, there is a clear link between migration and UK HIV incidence. Africans living with HIV in the UK face significant challenges, both due to stigma and discrimination against them and in relation to their immigration status.

The way forward

The recent history of AIDS in the UK has been marked by a number of important changes. As the situation continues to shift, government responses need to reflect these changes to minimise the future impact of AIDS in the UK.
Many of those being diagnosed in the UK now come from other countries with high HIV prevalence rates, and so the government’s commitment to tackling AIDS internationally can be seen as a part of its response to the epidemic at home. Commendably, the UK is one of the most significant international contributors of bilateral aid towards funding for the AIDS epidemic in developing countries.
At the same time, campaigners argue that the government also needs to renew its domestic response to HIV. In particular, many feel that there needs to be a greater focus on, and an improvement in, the services aimed at the two groups most affected by HIV in the UK: gay men, and people of African ethnicity.
HIV infection in the UK is not limited to these groups though, and with sexually transmitted infections becoming more widespread amongst the population as a whole, it’s clear that unsafe sexual practices are common in the UK. Sexual health services in general need to be improved, and the declining awareness of HIV amongst the general public needs to be addressed. If such steps aren’t taken, it’s likely that the UK epidemic will continue to expand in coming years.

References

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