Simon Collins

Simon Collins is an HIV positive treatment advocate who co-founded i-Base in 2000. 

“People living with HIV should have the choice to be actively involved in all aspects of our care. The latest information should be available in language that is easy to understand. This is so we can make informed decisions about our health.”

He co-ordinates the treatment information services including the phoneline and the website. Since 2003, he has edited HIV Treatment Bulletin and he also edits the i-Base treatment guides, a treatment training manual for advocates and ART in pictures: HIV treatment explained.

He wrote >300 articles on HIV and COVID-19 and has covered mpox (MPX) since 2022.

Over the years, i-Base copyright-free guides have been translated into many languages.

He is involved in developing community involvement in clinical research and treatment guidelines. These include several BHIVA (UK) and EACS (European) guidelines. He was a community member of various advisory and commissioning groups for NHS England.

He has been a member of the European Community Advisory Board (ECAB) since 1997 (and co-chaired from 2002-04) and cofounded the UK-CAB, which now has over 700 members. In 2002, he gave evidence to the UK parliamentary health committee on sexual health and in 2016 he contributed to the open discussions at the United Nations in New York on universal access to ART. In October 2021 he jointly won the 2021 EACS Award for Excellence in HIV Medicine.

Simon co-founded HIV i-Base with colleagues from the AIDS Treatment Project in London. He had volunteered at ATP and worked in various positions from 1997-2000 including as a peer advocate and director.

Publications

In addition to i-Base publications he has contributed as a community representative to many published papers and treatment guidelines. He has been an invited speaker at several HIV medical conferences and also presented original research. See Google Scholar or Orcid.

He reviews medical papers from a community perspective and is on the editorial board for HIV Medicine and Journal of Virus Eradication.

Links with research studies

Current and previous advisory roles as a community representative.

Current studies and research 2025

• RIO trial (cure-related research that includes using two long-acting bNAbs).
• BHIVA/UKHSA: National HIV Mortality Review Working Group. Research into current current HIV-related mortality in the UK.
• HIV and anal cancer – using a co-production approach to deliver person-centred care.
• HIV Genomics and Drug Resistance Database – this UK drug resistance database set up in 2001 has now expanded under UK-HSA to also to cover genomics.
• INSIGHT group (including the START study). Although START is now closed, the group is currently analysing results from extended follow-up until 2023.
• EMA Emergency Task Force – EU committee on mpox.
• AbVax study – looking at ways to combine a vaccine and bNAbs and the timong of ATIs.
• PROACT EU Response – a pan-European project to prepare for future epidemic or pandemics.
• SWIFT study – using semaglutide for weight loss in people living with HIV.
• VERDI study – media responses to mpox.
• Liverpool Drug Interactions – drug interaction services developed by Liverpool University.

Previous studies over the last 20+ years.

• EHVA (European HIV Vaccine Alliance). This includes a vaccine study related to cure research (EHVA01 and EHVA02). This research ended in December 2023.
• ASTRA (large cross-sectional questionnaire study about HIV treatment, lifestyle and transmission in HIV positive people in the UK).
• AURAH (large cross-sectional questionnaire study similar to ASTRA but in HIV negative people attending sexual health clinics in the UK).
• CHERUB (UK collaboration of researchers working on aspects of HIV cure research that includes the REACH and RIVER studies).
• CIPHER (a sub-study of ASTRA looking at cognitive function and brain-related disorders).
• COBRA (collaborative EU research on HIV and ageing).
• D:A:D study (the largest prospective international database study to look at side effects of HIV drugs and impact of other complications). Study now completed.
• EHVA (European HIV Vaccine Alliance). This includes a vaccine study related to cure research (EHVA01 and EHVA02). This study ended in December 2023.
• HALL study (social science research looking at issue of HIV in later life). Study now completed.
• HIPvac (randomised study comparing approaches including a vaccine to treating genital warts, predominantly in HIV negative adults). Study now completed.
• PANTHEON – programme of research into cost-effectiveness of strategies including self-testing to reduce HIV transmission (SELPHI study).
• LEAP – Long-Acting Extended Release ARV Resource Programme. Community involvement is led by Polly Clayden.
• PARTNER and PARTNER2 studies (risk of HIV transmission in sero-different couples where the HIV positive partner is taking HIV meds and has an undetectable viral load – and who do not always use condoms. PARTNER reported zero HIV transmissions after couples in the study had sex more than 58,000 times without condoms. The PARTNER 2 study in gay men reported zero transmissions after couples had sex 77,000 times without condoms. Study now completed.
• PLATINUM study. Study using tecovirimat for mpox. Study closed in 2023 due to low number of UK mpox cases.
• POPPY (UK study on HIV and ageing). Community involvement is now led by Memory Sachikonye.
• PROUD study (UK PrEP study using daily oral tenofovir/FTC to prevent HIV infection in HIV negative gay men and transgender women). The results, published in The Lancet in 2015, clearly showed dramatic benefit from PrEP to prevent HIV transmission. Study now completed.
• RIVER study – trying to reduce the latently infected viral reservoir in people who were recently infected. In 2018, this study reported no impact on reducing the viral reservoir.
• START study (a large international randomised study looking at when to start HIV treatment based on CD4 counts above 500 or waiting to 350 cells/mm³). Results in July 2015 showed that early ART reduced serious HIV-related illnesses even at high CD4 counts. This led to changes in treatment guidelines to routinely recommended ART for all. Long term follow-up continued until 2023.
• SUPA (interventional option to help adherence). Study now completed.
• TAILoR study (randomised study looking at use of telmisartan and insulin resistance in HIV positive people). Unfortunately, the results published in JID in July 2019, showed no benefit for the main study endpoint. Study now completed.
• UK-CHIC (prospective database that includes anonymised medical history from over 45,000 HIV positive people in the UK).
• UK Seroconverters Register (prospective UK cohort of people diagnosed within a year of infection). Study now completed.
• Member of the external advisory panel for Liverpool Biomedical Research Centre from 2007-2012. Research grants now completed.

Last updated: 1 July 2024.