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This is the second of two pages that document the history of AIDS in the UK. It covers the period from 1996 onwards, which has seen people with HIV in the UK living longer and healthier lives, thanks to significant advances in antiretroviral treatment. At the same time, HIV prevalence in the UK has continued to rise amidst a general deterioration in the country’s sexual health.

Another UK history page covers the years 1981-1995. AVERT.org also has pages on the global history of AIDS.

1996 History

In 1996, it became commonly acknowledged that protease inhibitors - a type of drug that had begun to be made available at the end of the previous year - were an effective part of HIV treatment. It became clear that the combination of three or more different antiretroviral drugs, taken simultaneously and regularly, could significantly delay the onset of AIDS in people living with HIV. This treatment was known as Highly Active Antiretroviral Therapy (HAART).¹

The relative wealth of the UK meant that although this combination therapy was expensive, it could be made widely available. There was much excitement about the potential of the treatment. Hospitals that had previously faced an increasing number of AIDS inpatients started to see numbers drop dramatically, as people living with HIV began to maintain their own treatment. Many of those who had previously been confined to hospital beds recovered their health and returned to work – an effect that was referred to as the “Lazarus Syndrome”.²

“This guy… had been on dual-nucleoside therapy for years and years. He was a skeleton. He was bound to die. We put him on an indinavir combination as soon as protease inhibitors came along in 1996. Six months later this big fat man walked into the clinic. He’d put on 40 kilos. I had no idea that that was what he naturally looked like! You suddenly think: ‘I’ve been involved with a disease that killed everyone, and now I’m telling patients “You’ll die in bed of old age if you take your pills”’.” - Professor Brian Gazzard, British AIDS expert³

1997 History

It was established that the use of HAART could induce severe side effects. Resistance could also occur, even when three drugs were being taken, and adherence was an important issue with many pills needing to be taken each day.⁴ However, HAART was found to have enormous benefits for many people living with HIV, and allowed them to live close to a normal life. The number of deaths among people living with HIV in the UK was falling rapidly, from 1,715 in 1995 to 737 in 1997.⁵

The Community HIV and AIDS Prevention Strategy (CHAPS), a campaign run by the Terrence Higgins Trust and funded by the Department of Health, was launched with the aim of reaching gay men with prevention messages.⁶

1998 History

As a result of HAART, the London Lighthouse closed its residential unit, and declared that instead of preparing people for death its focus would now be to help people live with HIV.⁷

1999 History

The Terrence Higgins Trust announced mergers with a number of other AIDS organisations: Bridgeside in Leeds, HIV Network in Coventry, Sussex AIDS Trust in Brighton, OxAIDS in Oxford, and counselling organisation Red Admiral Project in London.⁸

A judge ordered that a five-month-old baby girl would be tested for HIV against her parents' wishes. The mother was HIV positive and had been breastfeeding the baby, resulting in a 20% chance that the child would also be infected. The baby's parents had refused to have their daughter tested, contending that she was perfectly healthy and that they should have been able to decide what was best for her.⁹

Although the use of combination therapy had helped to decrease the rate of mother-to-child HIV transmission in the UK since 1996, many health professionals were concerned that the level was still too high.¹⁰ In response, the Government announced that all pregnant women would now be offered an HIV test as part of their routine care, and that they would be advised to take it whatever the circumstances surrounding the pregnancy. Under this initiative, the Government set the target of diagnosing 80% of HIV positive pregnant women before delivery by the end of 2002, which was expected to lead to an 80% reduction in the number of children born with HIV. ¹¹

The number of HIV infections amongst men who have sex with men began to rise again.¹² The Terrence Higgins Trust launched a campaign, ‘It’s Prejudice that’s Queer’, in an attempt to reduce homophobic social attitudes.¹³

1999 was the first year that the number of newly diagnosed heterosexually acquired HIV infections in the UK was higher than the number of newly diagnosed infections acquired amongst men who have sex with men.¹⁴

2000 History

The HEA, which had carried out the Government’s early AIDS campaigns, was disbanded in January to make way for the Health Development Agency (HDA).¹⁵ The HDA was a replacement body whose role was to reach specific targets and advise the Government on health issues. Many people in the AIDS voluntary sector were concerned that the end of the HEA would result in a lack of public information campaigns about AIDS, at a time when infections were rising.

Section 28, the controversial measure created by the 1988 Local Government Act, which had banned the promotion of homosexuality by local authorities, was repealed in Scotland.¹⁶ It remained in force in England.

In September, the first phase of a new vaccine trial was launched in Oxford. The trials were sponsored by the International AIDS Vaccine Initiative.¹⁷ The research was criticised by the World Bank for focusing on vaccines that could be marketed in western countries, despite the fact that more than 90% of HIV infections occur in the developing world.¹⁸

It was announced that the London Lighthouse was to merge with the Terrence Higgins Trust, as was the Aled Richards Trust. Some people were concerned that increasing mergers between AIDS charities were leading to a decrease in voluntary-sector diversity, while others argued that they were necessary in a climate where funding was decreasing.¹⁹

Body Positive London, one of the UK’s first AIDS organisations, closed.²⁰ Alongside the mergers that had been taking place, this was a sign that the AIDS voluntary-sector was gradually diminishing, largely as a result of modern antiretroviral treatment that allowed people living with HIV to be more self-sufficient.

Concerns were raised about the level of HIV drug resistance when it was announced that one in four people newly diagnosed with HIV in the UK were infected with a viral strain at least partly resistant to antiretroviral drugs.²¹

2001 History

The Government launched the first national strategy for sexual health and HIV, in an attempt to prevent rising rates of STIs, HIV and unintended pregnancies.²²

In April it was reported that 2000 had the highest annual total of new HIV diagnoses in the UK seen so far - around 3,500.²³

In Scotland, Stephen Kelly became the first person in the UK to be tried for culpable and reckless conduct in giving HIV to someone else. He had unprotected sex with his girlfriend in 1994 despite knowing that he was HIV positive. It was feared that the outcome of the trial might discourage HIV testing.²⁴

2002 History

In September a Public Health Laboratory Service (PHLS) report stated that 2,945 new HIV diagnoses had been recorded in the UK since the beginning of the year, compared with 2,345 in the same period the previous year. ²⁵ It was later recorded that between 1996 and 2002, the number of newly diagnosed HIV cases had more than doubled, from 2,685 to 5,847.²⁶ This rise was part of a general decline in sexual health that had taken place over the previous decade. There were increased calls for the Government to take action:

“HIV is a current, not a historical problem… The fact of the matter is that everybody needs to be aware of the risks. Every single HIV diagnosis is a devastating blow to the patient and their family.” - Dr. Kevin Fenton, PHLS²⁷

2003 History

It was suggested that potential NHS workers would face tests for HIV and hepatitis B and C before they could take up certain posts.²⁸

Mark Fowler, an HIV-positive character in the TV programme EastEnders, was written out after many years on the show.²⁹

According to new estimates, the number of people infected with HIV in the UK increased by almost 20% between 2001 and 2002, from 41,700 to 49,500, of whom 31% were undiagnosed.³⁰ However, it was now claimed that HIV transmission through injecting drug use had almost been eliminated in the UK, as well as in France and Germany.³¹

A 38 year-old man from London, Mohammed Dica, was given an eight-year prison sentence after deliberately infecting two lovers with HIV. This was the first time in 137 years that anyone had been convicted in England and Wales for deliberately transmitting a disease. However, he subsequently won the right to a retrial after the Court of Appeal ruled that the judge at his first trial should not have withdrawn information from the jury about whether his lovers consented to intercourse. The original judge had argued that this information was irrelevant and provided no defence for Dica since the women had “no legal capacity to consent to such serious harm”.³²

It was announced that the Government’s 1999 target of diagnosing 80% of HIV-positive pregnant women before they gave birth had been both met and exceeded by the end of 2002, which suggested that the number of children born with HIV had fallen significantly.³³

Section 28 was repealed in England, to the delight of gay rights activists. Local Government Minister Nick Raynsford said:

"For over a decade, Section 28 has cast a cloud of confusion and ambiguity over local authorities' ability to support and provide services to the whole of their community. Repeal means that this cloud has lifted."³⁴

A National AIDS Trust report entitled “Are You HIV Prejudiced?” presented a number of case studies of people in the UK facing prejudice as a result of their HIV status, and concluded that the issue was still a huge problem.³⁵ This coincided with the second year in a row that the theme of World AIDS Day (December 1st) was stigma and discrimination.

To mark World AIDS Day in the UK, the BBC broadcast an AIDS documentary entitled “The Hunt For the AIDS Vaccine”, which highlighted the problems that scientists had encountered in their efforts to eliminate AIDS:

“Despite work of dazzling complexity, the ambition of so many brilliant scientists has been constantly thwarted. Just as a vaccine seems to be working, the AIDS virus alters itself” ³⁶

2004 History

Government legislation removed a clause stating that anyone who had resided in the UK for 12 months, legally or illegally, had a right to free HIV treatment on the NHS.³⁷ With the removal of this clause, those residing in the UK illegally, such as failed asylum seekers and illegal immigrants, faced charges for HIV treatment that most could not afford. Some argued that this measure was necessary in order to stop ‘treatment tourism’, whereby people travel to the UK specifically to take advantage of free healthcare. Others argued that the legislation was inhumane, and compromised the ability of NHS staff to treat people on the basis of their needs rather than their nationality.

It was announced that between 1997 and 2003 there had been a 351% increase in the diagnosis of heterosexually acquired HIV infections in the UK, 70% of which was accounted for by individuals of African origin.³⁸ ‘Project Nasah’, a survey of black Africans living in the UK that was carried out by various AIDS charities and research organisations, concluded that the increasing population of African people living with HIV was the most complex challenge posed by HIV and AIDS in the UK. It also stated that more time and money needed to be put towards reaching this very diverse group of people with HIV prevention campaigns.³⁹

At the end of the year Health Secretary John Reid announced a new £300 million pound programme to modernise and transform sexual health services over the following three years. Among the goals declared was the reduction of waiting times for patients at GUM clinics (which provide treatment and testing for sexual health problems) to 48 hours and under by 2008.⁴⁰

2005 History

In January, Labour MP and former Culture Secretary Chris Smith announced that he had been HIV positive for seventeen years. He had been an MP since 1983 and come out as gay in 1984, but before this point he had told only his closest friends that he had HIV. He stated that his revelation was intended to challenge the prejudice surrounding HIV:

“[HIV] hasn’t stopped me tackling some of the most demanding jobs, and devoting myself passionately to the causes I believe in. And if that realisation helps to challenge prejudice and to give just a few other people the confidence and the determination to overcome the uncertainty, the fear, and the difficulty, then it’s worth talking about.”⁴¹

In March, at the third hearing of his case, Mohammed Dica was found guilty of reckless HIV transmission and was sentenced to four and a half years in jail. It was found that he had actively persuaded one of his partners not to use condoms, despite being aware that he had HIV.⁴²

In October, a Terrence Higgins Trust report revealed that sexual health in the UK was at the worst level seen since the Second World War. It also highlighted the fact that GUM clinics, which deal with HIV and other sexual health issues, had seen their workload increase by 70% since 1997 despite funding increasing by less than a third over the same period.⁴³

In November, there was a flurry of excitement in the media when it was suggested that British man Andrew Stimpson had “cured himself” of HIV infection. However this attention soon waned, as scientists and medical professionals argued that it was more likely that he had never been positive in the first place, and that he had received a “false positive” antibody test result.^{44 45 46}

2006 History

Conservative party chairman Francis Maude stated in February that his party’s lack of recognition of homosexuality might have contributed to the death of his brother from AIDS twelve years previously. He also said that he regretted voting for the 1988 Local Government Act, which had contained the infamous Section 28:

“I think if society generally and the government I served in had been more willing to recognise gay people then there would have been less of a problem. A lot of people like my brother would not have succumbed to HIV and lost their lives.”⁴⁷

Although it had been announced in 2003 that HIV transmission through injecting drug use had been practically eliminated, a report in March 2006 stated that it had been on the increase since then, and that it was now at its highest level since 1992. One in 62 injecting drug users were now found to be HIV positive, compared to one in 110 in 2002. This rise was partly blamed on an increase in HIV prevalence among drug users outside London, where it is more difficult to access needle exchanges and information about HIV.⁴⁸

In June, Sarah Jane Porter became the second woman in the UK to be sent to jail for infecting a lover with HIV. Despite knowing that she was HIV positive, Miss Porter did not inform her boyfriend and reportedly encouraged him to have unprotected sex, leading to him becoming infected as well. She also failed to inform other sexual partners of her HIV positive status. Psychologists reported that Miss Porter was in denial and was fearful of the stigma associated with HIV. While her actions were in no way excusable, many people (including AVERT) felt that prosecution was not the best route to go down in this situation. Once people start being convicted for reckless HIV transmission and the police are given permission to look into people's sexual histories, the situation becomes open to abuse - anyone who is infected with HIV could potentially create a case where an ex-lover is brought to court on the basis of speculative evidence. Furthermore, cases such as this increase the level of stigma and fear surrounding HIV. To read more about this issue, visit our Criminal Transmission Page.⁴⁹

2007 History

In March, an independent inquiry was launched into the thousands of HIV and Hepatitis C cases that occurred amongst haemophiliacs in the UK during the 1970s and 1980s as a result of contaminated blood products. The privately funded investigation followed years of campaigning by those affected, and their relatives, for more information about why the government and health professionals had failed to avert the tragedy. It is thought that 4,670 haemophiliac patients were exposed to hepatitis C, with 1,243 of those people also exposed to HIV. By the time of this inquiry, only 2,552 of those infected with Hepatitis C, and 361 of those with HIV, were still alive. Former Labour MP Lord Peter Archer, leading the investigation, said that:

"Hopefully our findings may help to restore public confidence in the future treatment of patients. We trust it will also help those afflicted and bereaved to come to terms with the tragedy - knowing much more of how it came about."⁵⁰

Two months after the inquiry had begun, BBC's Newsnight programme marked World Haemophilia Day (May 18th) with a documentary about the tragedy. The programme interviewed haemophiliacs, doctors, politicians and patient groups, and looked at evidence suggesting that some doctors may have used haemophiliacs to test whether certain blood products were linked to AIDS.⁵¹

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AVERT.org has more about:

• HIV and AIDS in the UK
• The early history of AIDS in the UK
• UK statistics summary
• Historical HIV and AIDS posters