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Documenting HIV epidemic: national survey of HIV archives

@documenting-hiv-uk.bsky.social
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Project to survey HIV and Aids archive collections in the UK. Based at West Sussex Records Office in Chichester, West Sussex.

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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 03/06/2025
The report outlines a 2-year project surveying HIV and AIDS archive collections in the UK, detailing their locations, strengths, and weaknesses. It also shares findings from private archives and offers recommendations for preserving and improving access to collections www.wsro.org.uk/special-proj...
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
Dr McKay conducted a series of oral history interviews in Canada and North America as part of his research, and fifty of his interviews were later deposited at the British Library. 8 of 8 www.cam.ac.uk/research/new... #HIV #AIDS #archives #oralhistory #PatientZero
cam.ac.uk
Research reveals accidental making of ‘Patient Zero’ myth during 1980s AIDS crisis
A combination of historical and genetic research reveals the error and hype that led to the coining of the term ‘Patient Zero’ and the blaming of one man for
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
It was not until years later that Dugas was publicly redeemed through the work of Canadian historian, Richard McKay, who wrote a book on "Patient Zero: The Making of the AIDS Epidemic" in 2016. 7 of 8 press.uchicago.edu/ucp/books/bo...
press.uchicago.edu
Patient Zero and the Making of the AIDS Epidemic
Now an award-winning documentary feature film The search for a “patient zero”—popularly understood to be the first person infected in an epidemic—has been key to media coverage of major infectious dis...
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
Dugas in the book was depicted as “careless, sociopathic Typhoid Mary-like character” and this was picked up by the popular press. 6 of 8 www.aidschicago.org/correcting-t...
aidschicago.org
Correcting the record: Gaetan Dugas, stigma, and the Patient Zero narrative - AIDS Foundation of Chicago
We all recall the first case of COVID-19 reported in the US in late January 2020, and the first waves of lockdowns beginning in mid-March of that year; the pandemic’s […]
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
Dugas would become vilified in Randy Shilts' 1987 book And the Band Played On: Politics, People, and the AIDS Epidemic, due to his misunderstanding of the term ‘Patient O’ used in the study to mean ‘Patient Zero’ and therefore the originator of the disease. 5 of 8 en.wikipedia.org/wiki/And_the...
en.wikipedia.org
And the Band Played On - Wikipedia
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
Over the course of the investigation, the CDC came across Gaetan who was happy to cooperate with the study and helped confirm the hypothesis that AIDS was spread through sexual transmission, which led to the eventual discovery of the HIV virus in April 1984. 4 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
By 1981, it had become clear that a new disease was emerging in USA and the Center for Disease Control (CDC) task force was set to “pursue the possibility of a cluster of cases connected by sexual contact within the last 5 years” (Killing Patient Zero, 2019, 35:53). 3 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
Gaëtan was a Canadian flight attendant who like many gay men of his generation saw “sex was kind of the gay man’s obligation…because this was gay liberation” (Killing Patient Zero, 2019, 21:50). He had multiple sexual partners across several cities particularly New York and San Francisco. 2 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 28/02/2025
#AtoZofHIVArchives Z- Patient Zero (Gaëtan Dugas) For the final post in the series, I have chosen Gaëtan Dugas (1953-1984), who is known in the history of HIV and AIDS as “Patient Zero”. 1 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
Many of the HIV archive collections held in UK archives are due to efforts of people like Mike in preserving history of HIV and AIDS and their often unheralded work should be applauded. Thanks Mike! wellcomecollection.org/works/b74me3gw #HIV #AIDS #Archives #PreP #historyofHIV 7 of 7
wellcomecollection.org
Archive of Mike Youle: AIDS Research and Treatment
<p>The following is an interim description which may change when detailed cataloguing takes place in future: </p><p>Archives of Mike Youle relating to his research and work on treatments and therapie...
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
He contacted the Wellcome Collection who agreed to be a place of deposit for the Archive and 10 collections were deposited including Mike Youle’s own personal papers, the archives of National AIDS Manual and International Community of Women Living with HIV/AIDS (ICW). 6 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
In March 2012, he began work in establishing a national AIDS archive he had begun collecting material from individuals and organisations in the wider community. 5 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
He is best known for publicising the concept of pre-exposure prophylaxis (PREP) for HIV and has studied the health economics of HIV therapy as well as ageing in HIV-positive people. 4 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
Since 1996 he has been the Director of HIV Clinical Research at London's Royal Free Hospital as well as an Honorary Senior Lecturer in General Medicine at its associated medical school. 3 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
Mike was one of the founders of the Kobler Clinic at Chelsea and Westminster Hospital in London in 1986, the first purpose built integrated care and research centre in the UK for HIV and associated conditions. 2 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 26/02/2025
#AtoZofHIVArchives Y is for Dr Mike Youle Mike Youle is a British doctor and clinical researcher specialising in HIV and AIDS treatment. He began treating HIV and AIDS patients at St Stephen’s Hospital (now Chelsea and Westminster) in London in the mid-1980s. 1 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
By the 1990s, attitudes to safer sex were less taboo, and both the government and voluntary groups were more confident to produce bolder and explicit adverts, such as the highly successful HEA “Mrs Dawson” TV advert (1991). www.youtube.com/watch?v=qdT8... 7 of 7 #HIV #AIDS #archives #safersex
youtube.com
Health Education Authority - Mrs. Dawson (1991, UK)
YouTube video by The Hall of Advertising
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
The Health Education Authority (HEA) responsible for HIV public health campaigns struggled to produce safer sex literature which could use frank language and appeal to their intended audience, e.g. gay men, and not upset the Conservative government and morale campaigning groups. 6 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
David Shenton, the British gay cartoonist was famous for lampooning the government’s efforts to promote safer sex to gay men in 1980s. He often ridiculed efforts within his regular comic strips published in Gay News and Capital Gay. 5 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
In reply, THT stated: “Although it was realised that the wording and/or pictures would be more than likely to cause offence in some quarters, and this was to be expected, it needs to be realised that such people were not the one’s at whom this particular message was being targeted" 4 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
In May 1985, Terrence Higgins Trust (THT) launched their first safer sex campaign with publication of the safer sex leaflet, Sex. The leaflet used explicit language and pictures and this was met by fierce opposition such as by the conservative moral campaign, Family and Youth Concern. 3 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
HIV continues primarily to be transmitted through unprotected sex and practicing safer sex one of the main ways to prevent it. But how can you do this to ensure that the message is understood and adopted and what if people object either morally or politically to the safe sex message? 2 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 22/02/2025
#AtoZofHIVArchives X – X-rated It is not possible to talk about history of HIV and AIDS without talking about sex. 1 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
The archives of Positively Women can be found out at the London Archives. They comprise of photographs, annual reports, newsletters, magazines and other publications demonstrating the breadth of the activity and the reach of its work from 1980 to date. #HIV #AIDS #archives #women #history 7 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
Sheila's full story has been adapted into a film available on the @positivelyuk website here: positivelyuk.org/sheilas-story/ 6 of 7
positivelyuk.org
Sheila's Story: A Film About Our Founder - Positively UK
This International Women's Day join us in celebrating our history which was based on the backbone of strong women!We’ve partnered with the talented filmmakers Kat Low and Chuck Blue Lowry to produce s...
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
One of the founders of the group, Sheila, explained the reason for setting it up: “I went to a few HIV/AIDS support groups were very gay orientated which was fine, because they were doing a great job supporting each other, but it wasn’t fine for me because my needs weren’t being met." 5 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
The absence of specific support for women’s issues with HIV spurred on the creation of early HIV support groups like Positively Women, which was established in 1987. 4 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
The National AIDS Manual of that year, on the topic of women and HIV focused on safer sex for lesbians who were seen as at increased risk and did not provide any guidance on issues of HIV and pregnancy, or issues surrounding HIV and the family. 3 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
In the UK, for the first few decades of epidemic, there were fewer cases of women contracting the virus with 3% of people diagnosed with AIDS being women in 1988. 2 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 19/02/2025
#AtoZofHIVArchives W - Women HIV and women intersect in multiple ways from those living with the virus, to mother-child transmission and impact on the family to name a few. As of 2023, 53% of people living with HIV were women according to UNAIDS. 1 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
Today, the candle light memorials are more often held in and around World AIDS Day in December, such as the candle lit memorial in Brighton held on World AIDS Day in 2023. 6 of 6 #HIV #AIDS #history #archive #memorial
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
The service was conducted in St Martins-in-the-fields church and organised by @thtorguk and @nationalaidstrust. The service featured readings by celebrities including Paul Gambaccini and Helen Mirren, as well as songs from Jacques Brel, Stevie Wonder and 'I have a dream' by ABBA. 5 of 6
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
The memorial became an annual occurrence in 1980s and 1990s. One of the attendee packs for the 1994 candlelight memorial held on 22 May 1994 can be found in the AVERT archive at West Sussex Records Office 4 of 6
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
The International AIDS Candlelight Memorial was established in 1985 and conducted AIDS Memorials on the third Sunday in May. The first candlelight memorial held in the United Kingdom was in Trafalgar Square in 1985 arranged by the Terrence Higgins Trust. 3 of 6
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
One early example of this was the first memorial to AIDS. On the 2nd May 1983, four young men living with AIDS coordinated the first vigil, ‘Fighting for Our Lives’ in San Francisco. This was repeated across other US cities that night, including New York and Dallas. 2 of 6
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 17/02/2025
#AtoZofHIVArchives V – is for candlelight vigils Lighting candles as an act of remembrance has been a long religious tradition in Western Europe. In more recent times this has developed into a form of non-violent protest or a show of support for a specific cause. 1 of 6
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
It is important that modern developments in HIV, whether it be U=U or the Fast Track Cities Initiatives are preserved as they likely to be of great interest to those researching the history of HIV in the future. 7 of 7 www.positiveeast.org.uk/uequalsu/ #HIV #U=U #Eastenders #PreP #archives
positiveeast.org.uk
uequalsu – Positive East
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
Due to the recency of the campaign limited records were held in heritage collections, but did find far more during my survey of private HIV collections such as recent publications by HIV I-base. 6 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
There are very few records relating to U=U in UK Archives and museums. The only example I found during the survey of HIV archives was a leaflet about the campaign produced Sex Health Wellbeing based in Edinburgh in the Thackray Museum. collections.thackraymuseum.co.uk/object-2020-... 5 of 7
collections.thackraymuseum.co.uk
2020.0059 | Collections Online
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
In 2023, the UK soap opera, Eastenders, had a storyline where the character, Zach Hudson, was diagnosed with HIV. The storyline reflected the realities of HIV today and underlined that the virus could not be passed on to anyone else if ongoing treatment. www.tht.org.uk/news/eastend... 4 of 7
tht.org.uk
EastEnders HIV storyline: What you need to know | Terrence Higgins Trust
On Monday's episode of EastEnders, Zack Hudson was diagnosed with HIV in a new major storyline.
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
By August 2021 the campaign had been endorsed by more than 1000 organisations from over 100 countries in the U=U campaign, including by leading scientific and medical organisations such as the International AIDS Society (IAS), UNAIDS, the British HIV Association (BHIVA) and the US CDC. 3 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
The statement is backed by 20 years of clinical research, including the European PARTNER study (2014-2016), which reported zero transmission from 900 couples where one partner was HIV-positive. 2 of 7
i-base.info
PARTNER and PARTNER 2 studies | HIV i-Base
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 12/02/2025
#AtoZofHIVArchives U stands for U = U: Undetectable = Untransmittable. The Prevention Access Campaign (PAC) launched the U=U campaign in 2016 to promote the largely unknown fact: people living with HIV who are on treatment and have an undetectable viral load cannot sexually transmit HIV. 1 of 7
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
THT also commissioned an AIDS memorial quilt to mark the 40th anniversary of his death. The quilt contains 8 panels relating to his life, and contributions from his friends and family. artsandculture.google.com/story/the-te... 8 of 8 #HIV #AIDS #archive #TerryHiggins #quilt
artsandculture.google.com
The Terry Higgins Quilt - Google Arts & Culture
Terry was the first named person to die from an AIDS related illness in the UK. This quilt was made to remember him in 2023.
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
In 2022, @THT commissioned the artist, Nathan Wyburn, to create a portrait of Terry Higgins, which is now displayed at the @museumwales 7 of 8 museum.wales/collections/... #HIV #TerryHiggins #Wales #THT
museum.wales
Painting - Collections Online
Portrait of Terrence Higgins (known as Terry) by artist Nathan Wyburn, 2022. Created to commemorate ...
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
In November 1982, they decided that, in memory of Terry, an organisation called the Terry Higgins Trust should be created to raise £100,000 for research into the condition. The charity has seen become the largest HIV charity in UK and in Europe. 6 of 8 #THT #HIV
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
The death brought some of his friends together to establish an organisation devoted to raising funds for research into this syndrome. They were convinced that something needed to be done to prevent more gay men facing the same illness that Terry had contracted. 5 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
He discharged himself after a few days, insisting that there nothing wrong. In June, he collapsed again and was admitted to St Thomas’ isolation unit, where he was diagnosed as having parasitic pneumonia. Although everyone expected him to make a full recovery, he died suddenly on a 4 July. 4 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
One evening in April 1982, Terry collapsed on the dance floor at Heaven and was taken to the nearby St Thomas’ Hospital, where the doctors were unable to diagnose or treat the condition. 3 of 8
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Documenting HIV epidemic: national survey of HIV archives @documenting-hiv-uk.bsky.social · 10/02/2025
He was an out and proud gay man who was well-known on the London gay scene, especially in the Charing Cross gay disco, Heaven, where he would often worked as a DJ. 2 of 8 www.theguardian.com/society/2022...
theguardian.com
‘He taught me about love, affection and great sex’: the untold story of Terrence Higgins
Britain’s best-known HIV charity was launched 40 years ago, but little is known about the man who inspired it. The trust’s co-founders, a former partner and a close friend, reflect on his extraordinar...
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