A History Of HIV And Human Rights In The UK

Human Immunodeficiency Virus (HIV) is a virus that affects and weakens the immune system. It was first identified in the 1980s, despite it having existed for decades by then. Over the past 40 years, UK society has seen significant developments for those living with HIV. In this timeline, we take a look back over those developments and how they relate to human rights.

1980s

In 1981, the first cases of ‘Gay-Related Immune Deficiency’, known as GRID, were identified in the United States. This disease would later be known as HIV.

In 1982, a 37-year-old man named Terry Higgins collapsed on the dancefloor of the London nightclub Heaven, where he would occasionally DJ. He later died at St Thomas’s Hospital. Terry was one of the first people in the UK to die of an AIDS-related illness. Later that year, cases of the same immune deficiency were found in heterosexual women and in communities of Haitians. The syndrome would soon become known as Acquired Immune Deficiency Syndrome, or AIDS. 

A year after Terry’s death, the Terrence Higgins Trust was born. It was a major year for public education, as the London Gay Switchboard and the Gay Medical Association held their first public meeting about AIDS. The Scottish AIDS Monitor (SAM) was also set up in 1983 to educate gay men about the threat of HIV and AIDS. Meanwhile, in the US, 3,000 cases had been reported, with 1,000 dying of the syndrome.

Towards the end of 1984, the UK had recorded 108 cases of Aids and 46 deaths. In the face of rising concern, the Terrence Higgins Trust set up a helpline and became a registered charity. 

In 1985, the Department of Health published its first advice on AIDS for medical practitioners. It was the first time medical professionals in the UK had been issued official advice on the topic. This was a year of official recognition, as the government agreed to meet with the Terrence Higgins Trust to develop mutual understanding. In the same year, the Health Education Council produced its first literature on AIDS.  

In 1986, Princess Diana made headlines when she opened the first specialist AIDS hospital ward in England. Middlesex Hospital would soon be known as the first institution to focus on AIDS care. In response to growing concern, the UK government set up a Cabinet Committee on AIDS.  

A year later, in 1987, gay rights activist Cleve Jones started to make the first panel of the AIDS memorial quilt, which he made in memory of Marvin Feldman, a friend who had passed away. 

In the same year, a controversial television advert would be seen on UK screens. The ‘monolith‘ advert, voiced by Sir John Hurt, depicted an apocalyptic scene of a volcano exploding and a tombstone carved with the word ‘AIDS’ on the front. The film was the result of a £5 million publicity campaign aimed at combating the growing spread of HIV and AIDS. An accompanying leaflet, ‘AIDS: Don’t Die Of Ignorance’, was sent to every household across the UK.

Under Section 28 of the Local Government Act 1988, it became illegal for local authorities to ‘promote’ homosexuality in schools. In 1988, the first calls for HIV testing would be made by insurance companies for men seeking policy cover exceeding £50,000. 

1990s

In 1990, a red ribbon became the international sign for AIDS awareness. The US passed policies that banned immigrants with HIV from entering the country, as well as anyone intending to arrive for a short-term visit. Backlash and protests led to many organisations protesting the international conference on AIDS, held in the US. 

In 1991, the UK’s National Audit Office found that millions of pounds allocated to dealing with AIDS had been spent on other programmes. Health authorities would be found to have ‘misspent’ the funds.

Two years later, in 1993, the UK Coalition of People living with HIV and AIDS was launched in London. However, in the same year, the health secretary, Virginia Bottomley, cut funding to the Terrence Higgins Trust by two-thirds. Little explanation was ever given. 

Unfortunately, it was just the start of funding cuts made by the British government. In 1994, the government removed all funding to multiple organisations, including the Terrence Higgins Trust, London Lighthouse and AIDS Ahead. The health secretary Julia Cumberlege also blocked a £2m campaign by the Health Education Authority to raise awareness of safe sex. The government was seen to be cutting off support for those fighting to raise awareness and support. 

In 1995, 25,000 people were living with Aids in the UK. A clinical trial called Delta found that combining two drugs together – AZT with ddI or ddC– was more effective at treating HIV than the single drug previously used. In 1996, the Terrence Higgins Trust, alongside the African Advocacy Foundation and the ATP, launched the ‘It’s Not Over’ campaign calling for availability for the new treatment. 

By 1997 there were 30 million people living with HIV worldwide. While this was a huge increase in diagnoses compared to the 1980s, death rates continued to fall due to the success of the Delta trial’s new treatment.

In 1998, the UK’s Human Rights Act was passed. Under it, people with HIV can invoke their rights in UK courts. For example, people living in care settings with HIV can assert their right not to be subjected to inhuman or degrading treatment if they are being denied proper care because of misplaced fears around transmission.

Towards the end of the 1990s, devolution of government in the UK came into effect. The Scottish Parliament and the National Assembly for Wales gained powers and responsibility for ‘devolved matters’. Devolution gave Scotland and Wales the ability to make decisions on issues within their own jurisdiction, including justice, health and education. 

In 1999, there were more heterosexuals diagnosed with HIV than gay or bisexual men in the UK. Despite a fall in death rates, AIDs was listed in the World Health Report as the fourth biggest killer worldwide. Just 20 years after the epidemic began, laws were struggling to keep up. In the same year, a judge ruled that a child born to a mother with HIV must be tested, regardless of the father’s wishes.

2000s

In 2001, one in four people diagnosed with HIV in the UK were infected with a viral strain at least partly resistant to antiretroviral drugs. In response, the government launched the country’s first national strategy for sexual health and HIV, despite having cut funding for several campaigns the decade before. The law continued to hear cases related to HIV. In Scotland, an individual was found guilty of culpable and reckless conduct in transmitting HIV. It was the first case of its kind in the UK. A year on, the first person in England was convicted for the reckless transmission of HIV. 

In 2002, the UK government scrapped funding for HIV prevention work, as new figures showed HIV diagnoses rising. Meanwhile, there was another call for the US to end its ban on people with HIV entering the country. At the same time, the Terrence Higgins Trust launched the Black Gay Equality Scheme. The scheme focused on challenging homophobia in Black and minority ethnic communities. 

Two years later, in 2004, the Department of Health published the white paper ‘Choosing Health: Making Healthier Choices Easier’. The paper included a three-year commitment from the government to spend an extra £300m on sexual health services. 

However, in the same year, the Department of Health introduced new regulations to block failed asylum seekers and undocumented migrants from receiving HIV treatment from the NHS. The right to health is protected by the Universal Declaration of Human Rights (1948) and in the International Covenant on Economic, Social and Cultural Rights (1966), to which the UK is a signatory. This means the UK is bound, by international law, to protect the right to health. 

In 2005, the House of Commons Health Select Committee recommended that the government lift the restrictions on access to free HIV treatment for failed asylum seekers and undocumented migrants.

In December 2005, in a landmark development, civil partnerships between same-sex couples were legalised in the UK. 

Over the next two years, despite an overall decline in positive diagnosis, cases remained high among gay men and Black African people. 

In 2009, the US army and the Thai government trialled a ground-breaking HIV vaccine that cut the risk of infection by a third. Meanwhile, in the UK, a coalition of HIV organisations published a framework for social care which looked at the quality of life for people living with HIV in England.

2010s

In 2010, the Equality Act came into effect in the UK, making indirect discrimination unlawful and ending employers asking pre-employment health-related questions to people living with HIV.

The Terrence Higgins Trust study ‘50 Plus’ focusing on HIV and ageing was undertaken. It found that older people’s finances and health were particularly affected if they were living with HIV. 

A year later, the blood authority lifted the ban on gay men donating blood in the UK. It has led to an uptake of members of the LGBTQI+ community making blood donations. 

In 2012, the first National HIV Testing Week for England began and two guides for health and wellbeing advice for transgender people were published. The guides were the first of their kind in the UK.

2020s

On 15 March 2020, UK Health Secretary Matt Hancock announced that pre-exposure prophylaxis (PrEP) would be made available free on the National Health Service (NHS) to those at high risk of HIV infection from April that year.

On 22 January 2021, the landmark series, It’s A Sin, aired on Channel 4. The series which was set in 1981 follows the lives of five friends living through the HIV/AIDS epidemic. The series would become a flagship for LGBTQI+ awareness.

In 2022, London’s largest Pride took place, with approximately a million people gathering for the first march since the coronavirus pandemic hit the UK and prevented gatherings from taking place. The event marked the 50th anniversary of the UK’s first Pride parade.

For more information and useful resources on HIV and human rights in the UK, check out our spotlight on the topic here.