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UK HIV & AIDS History: 1996 Onwards
Since 1996, people with HIV in the UK have lived longer and healthier lives, thanks to significant advances in antiretroviral treatment. At the same time, annual infections have generally risen year on year.
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. The combination of three or more different antiretroviral drugs, taken simultaneously and regularly, was found to significantly delay the onset of AIDS in people living with HIV. This treatment was known as Highly Active Antiretroviral Therapy (HAART). 1
The UK's relative wealth 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 expert 3
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, making a significant difference to their lives. 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
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
A health insurance policy, underwritten by Lloyd's of London, launched an income protection policy targeted at gay men in the event they became infected with HIV. 8
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. 9
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 percent 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. 10
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. 11 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 percent of HIV positive pregnant women before delivery by the end of 2002, which was expected to lead to an 80 percent reduction in the number of children born with HIV. 12
This year was the first in which 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
The year 2000 had the highest annual total of newly reported HIV diagnoses in the UK seen so far - over 3,000. 15
The Health Education Authority (HEA), which had carried out the government's early AIDS campaigns, was disbanded in January to make way for the Health Development Agency (HDA). 16 The HDA's role was to reach specific targets and advise the government on health issues. Many people in the HIV and AIDS voluntary sector were concerned that the end of the HEA would result in a lack of public information campaigns about HIV and AIDS, at a time when infections were rising.
The HIV and AIDS voluntary-sector was gradually diminishing, largely as a result of modern antiretroviral treatment
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. 17 It remained in force in England.
In September, the first phase of a new AIDS vaccine trial was launched in Oxford. The trials were sponsored by the International AIDS Vaccine Initiative. 18 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 percent of HIV infections occur in the developing world. 19
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. 20
Body Positive London, one of the UK's first HIV and AIDS organisations, closed. 21 Alongside the mergers that had been taking place, this was a sign that the HIV and 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. 22
In response to rising rates of STIs and the largest ever HIV transmission rate during the previous year, 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. 23
In Scotland, Stephen Kelly became the first person in the UK to be tried for culpable and reckless conduct for HIV transmission. 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
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. 25 It was later recorded that between 1996 and 2002, the number of newly diagnosed HIV cases had more than doubled, from 2,696 to 5,854. 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, PHLS 27
It was announced that Mark Fowler, an HIV-positive character in the TV soap EastEnders, would be written out of the show. 28 The story line had helped to raise awareness of HIV and AIDS among viewers.
The government’s 1999 target of diagnosing 80 percent of HIV-positive pregnant women before they gave birth was both met and exceeded by the end of the year, a vital step in lowering the infection rate among children born to HIV-positive women. 29
It was suggested that potential NHS workers would face tests for HIV and hepatitis B and C before they could take up certain posts. 30
According to new estimates, the number of people infected with HIV in the UK increased by almost 20 percent between 2001 and 2002, from 41,700 to 49,500, of whom 31 percent were undiagnosed. 31
A 38 year-old man from London, Mohammed Dica, was given an eight-year prison sentence after infecting two lovers with HIV. This was the first time in 137 years that anyone had been convicted in England and Wales for 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
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." 33
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. 34 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" 35
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. 36 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 percent increase in the diagnosis of heterosexually acquired HIV infections in the UK, 70 percent of which was accounted for by individuals of African origin. 37 A survey of black Africans living in the UK, 'Project Nasah', carried out by various HIV and AIDS charities and research organisations, concluded that the increasing number of African people living with HIV in the UK was the most complex challenge posed by the epidemic. It also stated that more time and money needed to be put towards reaching this very diverse group of people with HIV prevention campaigns. 38
At the end of the year, health secretary John Reid announced a new £300 million 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. 39
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.” 40
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. 41
In October, a Terrence Higgins Trust report revealed that sexual health in the UK was at the worst level 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 percent since 1997 despite funding increasing by less than a third over the same period. 42
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 he was probably not infected in the first place, and that he had received a 'false positive' antibody test result. 43 44 45
December 1, World AIDS Day, saw politicians boarding Stop AIDS Campaign's London bus that was urging universal treatment targets to be met. Prime Minister Tony Blair was among those who discussed the matter with the campaign.
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.” 46
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 a needle exchange and information about HIV. 47
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. Many people 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. 48 To read more about this issue, visit our Criminal transmission of HIV page.
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 occurrence. 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." 49
According to a report the following year, there were 7,734 HIV diagnoses in 2007, the highest number ever reported in the UK. 50
During 2008, the cumulative number of HIV diagnoses across all years passed the 100,000 mark. 51
The 2004 target to ensure access to an appointment at a GUM clinic within 48 hours had been set for March 2008. Figures released in February showed that 92 percent of patients were offered an appointment within 48 hours and 80 percent of patients were seen within 48 hours. 52
With around a third of people living with HIV in the UK unaware of their status, and late diagnosis being a major problem, a policy of universal testing in areas of higher prevalence – at least 0.2 percent – is recommended by leading HIV and sexual health organizations. 53
A seven year £6 billion initiative is launched by the Department for International Department to tackle the epidemic overseas. However, the strategy was criticised by the International Development Committee:
“We find the Strategy to be strong on rhetoric but weak in communicating how DFID will implement it.” 54
Nelson Mandela’s 90th birthday party in Hyde Park – featuring famous guests and performers including Bill Clinton and Queen – raised money for his 46664 HIV and AIDS charity.
Nick Partridge, chief executive of the Terrence Higgins Trust, was awarded a knighthood, for his work in tackling the HIV and AIDS in the UK. 55
In early 2009 the findings from a study reveal that the number of HIV-positive African UK residents who have acquired their HIV infection in the UK rather than Africa, is higher than previously estimated. The data indicate that up to a third of HIV-positive African UK residents may have become infected with the virus in the UK. 56
In February, results were released from the 2007 inquiry into cases of HIV and hepatitis C among hemophiliacs. Lord Archer presented a report that investigated the circumstances surrounding the case and its consequences for those affected. It concluded that the U.S suppliers of the contaminated blood were ultimately responsible for the contamination but that the UK government should have responded quicker to the dangers of the HIV infections.
The report also argued that those affected by the tragedy should be given more compensation by the UK government. Being an independent public inquiry, however, did not oblige the government to do this. 57
In October David Furnish unveils an AIDS memorial in Brighton, the first of its kind in the UK. 58 The bronze sculpture, created by Romney Mark Bruce, sits at the top of New Steine Gardens in Kemp Town.
In November 2009 ViiV Healthcare is officially launched. 59 The new company, established by the two pharmaceutical giants GlaxoSmithKline and Pfizer, has been created specifically for HIV research and development. Dr Dominique Limet, Chief Executive Officer of ViiV says:
"ViiV Healthcare has a sustained commitment to delivering advances in HIV care and treatment. By focusing solely on HIV, we will have the ability to explore a broad and diverse range of opportunities within this specialist area of medicine." 60
The Health Protection Agency released their HIV in the United Kingdom report for 2009. An estimated 83,000 people were living with HIV in the UK, a quarter of whom were unaware of their infection. 61 In addition, late diagnosis of HIV infection continued to pose a major threat to tackling the UK's HIV/AIDS epidemic.
Record levels of people in the UK had been diagnosed with a sexually transmitted disease this year. 62 The most at risk were found to be under 25, with high rates of re-infection among this age group. Sexual health organisations blamed the lack of comprehensive sex education in schools for this increasing trend among young people. 63
In contrast to the previous year, for the first time in ten years there was a small decrease in the total number of STIs diagnosed in England, particularly chlamydia among young people. 64
In February, Mark Devereaux from Dundee was sentenced to jail for ten years for infecting his girlfriend with HIV. 65 The sentence was later changed to eight years. 66 This added to the string of other HIV-related transmission trials in the UK in the first decade of the 20th century.
Just before the XVIIIth International AIDS Conference in Vienna, it was revealed that there had been a surge in HIV cases among people aged over 50 in the UK. The Health Protection Agency (HPA) reported that HIV diagnoses had tripled in this age group (229 in 2000 compared to 710 cases recorded in 2007). 67 Despite the increase, there was a decline in new HIV diagnoses overall, mainly as a result of fewer diagnoses of heterosexual infection acquired abroad. 68
The National AIDS Trust had its own theme for World AIDS day (December 1st), 'Act Aware.' 69 The aim of the novel theme was to encourage people nationwide to 'do something' by making a commitment to "help improve understanding about HIV in the UK, prevent HIV transmission and stop prejudice." The theme for World AIDS day around the world was 'Universal Access and Human Rights'.
HIV infection rates had doubled in the last decade. 70 A report from the House of Lords Select Committee into HIV and AIDS declared, "awareness of HIV and AIDS in Britain has fallen below the public radar." The report warned that the present HIV response was "woefully inadequate" and would not stem the growing epidemic in the UK. More resources directed towards HIV prevention, including wider access to HIV testing, were identified as key measures needed to reduce new HIV infections in the UK and effectively deal with the epidemic. 71
Rather than this report spurring increased investment in prevention, 2011 saw HIV and AIDS prevention programmes affected by the general spending cuts to public services in the UK. The chief executives of London’s Primary Care Trust decided to reduce funding for these services by 20 percent. HIV organisations in London expressed 'disappointment' and 'concern' over the cuts, with Mark Delacour, from the Lesbian, Gay, Bisexual and Transgender Consortium describing the decision as "outrageous". 72 73
“It is ludicrous to cut HIV prevention and a very short-sighted decision…it will cost more in the long term.” - Mark Delacour, the Lesbian, Gay, Bisexual and Transgender Consortium
A study found that African people living in the UK in serodiscordant relationships often experience disempowerment and uncertainty, demonstrating a need to reach this group with more support and advice on different prevention options for serodiscordant couples. 74
In November, changes to the UK Department of Health’s blood donation policy for men who have sex with men (MSM) came into force. Previously a lifetime ban was in place on blood donations made by any man who had had sex with another man. Under the new policy, men who had not had sexual contact with another man for over 12 months were eligible to donate blood, bringing the donation criteria for MSM in line with other high-risk groups with a twelve-month deferral period. 75
Following an HIV-positive dentist bringing the Department of Health to court on grounds of discrimination, the DofH opened a consultation on lifting the ban on HIV-positive healthcare workers performing ‘exposure-prone’ procedures. 76 A working group of experts suggested that changes to the policy, which would be implemented in 2012, should allow HIV-positive healthcare workers to perform invasive procedures as long as they have a low viral load, are taking combination antiretroviral treatment and are under supervision by a consultant in occupational medicine as well as their usual doctor.
In February, the Department of Health announced that it would make HIV treatment universally available, regardless of citizenship or immigration status. Under this proposal, HIV treatment provision would be put in the same bracket as treatment for other sexually transmitted infections including tuberculosis and malaria, which have been free and available to all on the NHS for many years. “This measure will protect the public and brings HIV treatment into line with all other infectious diseases. Treating people with HIV means they are very unlikely to pass the infection on to others,” said Anne Milton, the Public Health Minister and a former nurse. The government maintained early diagnosis of people living with HIV would ultimately contribute to reducing costs. 77
Government budget cuts were forcing local councils to spend less of their HIV/AIDS Support allocation on social care for people living with HIV, the ‘HIV Social Care in England: A survey of local council funding’ report by NAT revealed. However, over 25 percent of councils were supplementing their HIV specific funding with additional funding from elsewhere. The report also identified specific funding for HIV-related social care, and giving HIV training to social care staff, as increasingly important. 78
According to the African Health Policy Network (AHPN), faith leaders in communities across the UK were claiming to ‘heal’ those living with HIV through prayer. This was encouraging HIV-positive people to stop taking their life-saving antiretroviral drugs. Cases were reported to have taken place in Finsbury Park, Tottenham, and Woolwich in London, as well as in Manchester and Leeds. Jacqueline Stevenson, AHPN's Head of Policy said: "The government, the Department of Health, and local authorities are not doing enough to respond to this." 79
The online edition of AIDS reported the pregnancy rate among HIV-positive women in the UK increased significantly between 2000 and 2009. This was attributed to developments in treatment and care which lowered the risk of mother-to-child transmission of HIV to below 1 percent. 80
In March, George Osborne, Chancellor of the Exchequer, announced that the UK would meet its target of spending 0.7 percent of GDP on international development for the year, establishing the country as a world leader in the HIV response. The commitment was well received by Michel Sidibé, Executive Director of UNAIDS, who said: “The UK is once again demonstrating its steadfast leadership.” “Even in times of global economic difficulty it shows they have the interests of the world’s poorest and most vulnerable people at the forefront and UNAIDS looks forward to continuing our close collaboration.” The UK became the first member of the G8 to meet the 0.7 percent target pledged by United Nations Member States over 40 years ago. The UK became only the sixth country to meet the 0.7 percent target joining Denmark, Norway, Sweden, Luxembourg and the Netherlands. 81
On 1 April 2013, the Health Protection Agency (HPA) became part of Public Health England (PHE). 82 The PHE report, ‘HIV in the United Kingdom: 2013’ said between 93,500 and 104,300 people were living with HIV in the UK in 2012. Prevalence among the general population was 1.5 per 1000 people (1.0 in women and 2.1 in men). There were 490 deaths among people living with HIV in 2012, continuing the fall seen since the introduction of antiretroviral therapy (ART). The report called for earlier treatment combined with a substantial increase in the frequency of HIV testing among groups most affected, particularly MSM and Black-African men and women. 83
Another PHE report, ‘Shooting Up: Infections among people who inject drugs in the UK 2012’, found that those who inject image and performance enhancing drugs are at the same transmission risk for HIV, Hepatitis B and Hepatitis C as those who inject psychoactive drugs (e.g. heroin and crack-cocaine). Similarly, a survey from 2010 in the National AIDS Trust report on ‘HIV and Injecting Drug Use’, found a high proportion of people living with HIV who inject drugs were co-infected with Hepatitis C (83 percent). 84
In August, Ministers announced plans to change the law in order to allow HIV self-testing kits. This would enable people to perform a simple saliva test at home, which would quickly give the user a “negative”, or a “positive” result. It was hoped that making the tests more readily available would help reduce HIV prevalence. 85
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