Simon Collins is an HIV positive treatment advocate who encourages people to take an active role in their own health. He started ART in 1996 with a CD4 count in single figures.
“HIV positive people should have the choice to be actively involved and represented at all levels of our care. Free access to the latest information should be available to everyone. We need this before 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 and the treatment training manual for advocates. In 2017, he produced ART in pictures: HIV treatment explained.
These copyright-free publications have enabled information to 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 900 members. Also 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.
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.
In addition to i-Base publications he is a contributing author to several published papers, guidelines and conference abstracts, see Google Scholar.
Links with research studies
Simon is or was involved as a community representative on the following current or recent research studies:
- RIO (cure-related research that includes using two long-acting bNAbs).
- 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).
- EHVA (European HIV Vaccine Alliance). This includes a vaccine study related to cure research (EHVA01).
- 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).
- HIV Drug Resistance Database – Ongoing database that now has more than 125,000 resistance test sequences collected in the UK since 2001. This research resource answers important questions on drug resistance.
- 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 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 couple had sex 77,000 without condoms.
- 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). The results, published in The Lancet in 2015, clearly showed dramatic benefit from PrEP to prevent HIV transmission.
- 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 continues in the study.
- SUPA (interventional option to help adherence).
- 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.
- 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).
- Member of the external advisory panel for Liverpool Biomedical Research Centre from 2007-2012.
Last updated: 12 July 2020.