Simon Collins is an HIV positive treatment advocate who works to encourage people living with HIV to take an active role in their own health. He was lucky enough to be access combination therapy in 1996 which he started with a CD4 count in single figures.
“HIV positive people should have the choice to be actively involved and represented at all levels of their care. Free access to the latest information should be available to everyone before we make treatment decisions about our health.”
Simon co-ordinates the i-Base treatment information services including the phoneline and the website. Since February 2003 he has edited HIV Treatment Bulletin and he also edits the i-Base treatment guides and the treatment training manual for advocates. Producing copyright-free publications has helped enabled information from these resources be translated into over 35 languages.
He is involved in developing community involvement in clinical research and treatment guidelines. He has been on the writing committee for several BHIVA (UK) and EACS (European) guidelines. He a member of the Drugs Sub Group for London HIV commissioners and on the Drugs Advisory Group for HIV Clinical Reference Group (CRG) for NHS England).
For two years, he co-co-chaired the European Community Advisory Board (ECAB) and in 2002 cofounded the UK-CAB which now has over 800 members. Also in 2002, he gave evidence to the UK parliamentary health committee on sexual health and in 2016 he contributed to the discussions at the United Nations in New York on universal access to ART.
He is involved as a community representative on several current research studies.
- 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 or 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 looking at side effects of HIV drugs and impact of other complications).
- HALL study (social science research looking at issue of HIV in later life).
- HIPvac (randomised study comparing approaches including a vaccine to treating genital warts, predominantly in HIV negative adults).
- INSIGHT group (including the START study – see below).
- 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 Programe
- PARTNER study (risk of HIV transmission in sero-different couple where the HIV positive partner is taking HIV meds and has an undetectable viral load.
- POPPY (UK study on HIV and ageing).
- PROUD study (UK PrEP study using daily oral tenofovir/FTV to prevent HIV infection in HIV negative gay men and transgender women).
- RIVER study – trying to reduce the latently infected viral reservoir in people who were recently infected. This study related to cure research involves a treatment interruption.
- 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).
- SUPA (interventional option to help adherence).
- TAILoR study (randomised study looking at use of telmisartan and insulin resistance in HIV positive people).
- UK-CHIC (prospective database that includes anonymised medical history from over 45,000 HIV positive people in the UK).
- UK HIV Drug Resistance Database (independent research database of resistance test results).
- UK Seroconverters Register (prospective UK cohort of people diagnosed within a year of infection).
- He was a member of the external advisory panel for Liverpool Biomedical Research Centre from 2007-2012.
Simon co-founded HIV i-Base in 2000 with colleagues from the AIDS Treatment Project in London where he volunteered and worked in various positions from 1997-2000 including as a peer advocate and director.
Last updated: 19 November 2016