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Participating in an HIV vaccine trial

Participating in an HIV vaccine trial. By Jo Robinson, London, UK. A participant’s perspective. Trial characteristics Am I a typical participant? Beginning – informed consent The jabs The middle stage – clinic experiences Things start to go wrong

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Participating in an HIV vaccine trial

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  1. Participating in an HIV vaccine trial By Jo Robinson, London, UK

  2. A participant’s perspective • Trial characteristics • Am I a typical participant? • Beginning – informed consent • The jabs • The middle stage – clinic experiences • Things start to go wrong • Pressure and thoughts about withdrawing consent • Coming full circle – the future

  3. Trial characteristics • A participants’ perspective: • Part of a group of 120 –twinned with Kenya • Clade C DNA + MVA prime boost approach • Trial visits at St. Mary’s Hospital, London, UK • Results announced August 2004 shown to have poor un-sustained immunological results • IAVI decided to halt work on its DNA technologies • Un-blinded October 2004 – I was given 0.5mg DNA (low dose) plus MVA.

  4. Am I a typical volunteer? • Sex: Female (All volunteers: 55% female, 45% male) • Age: 29 (Mean age: 35) • Current sexual partner: (All volunteers: 61%) • Employed/Student: (All volunteers: 97%) • Sexuality: Gay (All volunteers: 22% gay) • Main motivation: Altruism (All volunteers 44%) • Link with HIV: Family & friends affected (All volunteers: 30%) • Interest in subject: (All volunteers: 32%)

  5. Jargon: They say: A randomised double blind placebo controlled trial We say: No one knows what’s going on They say: Fill in this form, and this one, and another 5 and we ask you to read back to us what is in your form so you understand We say: I’m bored and it’s annoying how many questions I have to answer about my sex life Raised liver enzymes – further tests, no payment Enrolment – blood tests More blood tests, and more… No payment for first four visits as nurse has not been to the bank (again) A set of blood tests from a stranger who then turned out to be Ken Beginning – informed consent

  6. My mind goes to work on the jabs • The jabs – they hurt, and cause big red marks • Testing and monitoring – more visits • Starting to really think about DNA and the delivery mechanism, - worrying about my own body – can I trust this technology? • The mice story – pre-cancerous cells are discovered in mice in labs receiving MVA – the trial is halted • Feelings around withdrawing consent • Feeling pressurised (by myself) not to withdraw.

  7. My (work) life • I start to have health problems and clinic healthcare is better than my GP. I start to ask are these problems vaccine related? • Being part of a small group of HIV NGOs invited to talk about vaccine trials – being told the trial you’re on won’t work (early) • Press enquiries – talking as a participant as well as a worker • Worrying well-meaning friends – HIV stigma • Other healthcare workers – assumptions about HIV status from the GP, in the sexual health clinic etc. • Cynicism hits the field (futility of volunteering becomes an issue) • Trial data on hold again – the mice – finding out by mistake from IAVI

  8. Coming full circle – moving on • Now widely acknowledged that if you participate once you probably can’t again (solves that dilemma!) • Issues around whether using these early vaccines will mean you can’t benefit from one that might really work • Lack of feedback mechanisms – no participant evaluation, no social research, no Community Advisory Board or other involvement techniques. • DNA technologies dropped by IAVI. • Forming a UKCAB sub-group on vaccines and microbicides and looking to the future.

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