Simon Collins blog

Simon reports on treatment news and HIV research. He edits HIV Treatment Bulletin (HTB) and the i-Base treatment guides and co-ordinates the i-Base treatment information services. He has been an advocate for over 15 years.

Open letter: on futility of proposed UK PrEP study

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The following letter was sent to Public Health England (PHE) in response to being asked to join a community advisory board for proposed further PrEP research. There are important questions about PrEP but this propsed study is looking at none of these.

The letter was sent to Linda Lazarus at Public Health Endland, on behalf of Professor Kevin Fenton and Professor Noel Gill in reply to the invitation posted further below.

Dear Linda

blog token graphic

Tokenal study and tokenal offer of community involvement

Thank you for offer to join this community advisory board.

I am sorry but I am going to decline the invitation.

This proposed study is simply a delaying tactic to prevent access to an intervention that has already been carefully and thoroughly studied, including in the UK.

There are no valid scientific, safety or practical questions that warrent further block to access. Quite the opposite – the current ongoing crisis in HIV incidence that has remained unchanged for the last decade, despite the impact of the vast majority of HIV positive people who are diagnosed being unable to transmit HIV because they have an undetectable viral load – will gain nothing from further delays.

The concept that UK doctors, despite their expertise in sexual health, do not have the skills or capacity to appropriately prescribe PrEP is staggering.

It is frankly farcical that people with rigourous scientific backgrounds are being pulled in to a cover to further cover up these delays in access.

Do you think anyone is likely to be impressed by waving a shameful £2 million as if these crunbs will have any meaningful impact on reducing infections?

The PROUD study, saved at least £5 million by not requiring roll-over into the already funded larger extension phase, becasue these questions were already answered 18 months ago.

Even if in several years the outcome of your proposed research recommends access, NHS England will still limit access similar to the caps on treatment for new drugs to treat hepatitis C.

On this basis, the money would be better spent by providing genuine access, however limited. It would be better spent in ensuring that monitoring for people using generic PrEP is established in NHS clinics, with appropriate training for NHS staff to proactively offer this service. It would be better spent in collecting evidence from people currently using generic PrEP.

This proposed study does not come from any community demand for further data. The community have not been involved in this decision. The advisory group you are proposing will be a futile as the study itself.

I will clarify my position publically on your proposed research.

I will also actively encourage participants that enrol, should the study go ahead, not collaborate in any further attempts to gather data.

Yours sincerely

Simon Collins

cc:

Silvia Petretti, Chair, UK-Community Advisory Board

Memory Sachikonye, Community representative, CRG

Paul Clift,  Community representative, CRG

Gus Cairns, Co-chair PROUD study

Sheena McCormack, PI PROUD study

Greg Owen, Founder IwantPrEPnow

Yusef Asad, National AIDS Trust

David Asboe, Chair, British HIV Assocation

…………..

Dear Mr Collins

HIV-PrEP: PHE Co-ordinated Public Health Trial/Pilot – Invitation to contribute to Community Advisory Board – Meeting Wed June 29th

PHE has been asked by NHS England and the DH to co-ordinate an HIV-PrEP public health trial/pilot to evaluate how the intervention could be provided in England as part of a package of HIV prevention in the most cost effective and integrated way to reduce HIV and sexually transmitted infections in those at high risk.  Two million pounds are available for this pragmatic trial which will take place over 24 months beginning in the financial year 2016/17 and continuing through 2017/18.

In designing and implementing this trial, PHE is seeking advice from relevant experts and community members in the form of both an HIV-PrEP Expert Task & Finish Group and an HIV-PrEP Community Advisory Board.  We are aiming to have these groups meet on the same day on four occasions between end June 2016 and end January 2017 – the first meetings are scheduled for Wed June 29th(Expert Group 10.30 to 13.00, Community Advisory Board 13.00 to 15.30) at The Wesley, Euston House, 81-103 Euston Street, London NW1 2EZ. (N.B. PHE will reimburse travel expenses to attend the meeting at standard class rail fare/oyster card tube/bus fare. Please keep your receipts to claim expenses.)

Proposed objectives of the trial include measuring the outcome of clinical risk assessments, evaluating triaging the intervention to those in most need, recording adherence and adverse events, and evaluating the effect on rates of HIV and STI acquisition.

The responsibilities of the Expert Task & Finish Group and the Community Advisory Board are to:

a)       Advise on the trial objectives and design,

b)       Comment on draft call for ‘Joint Expressions of Interest’ by the GUM clinics and LA commissioners,

c)       Assist with the development of trial site selection criteria,

d)       Advise on resource and other commissioning issues, in particular the direct and indirect additional costs of conducting the trial,

e)       Provide assistance with trial messaging, promotion and implementation.

We would be grateful if you or a suitable nominee would be agreeable to joining the Community Advisory Board and if you could note the timing of the first meeting.

Looking forward to your response.

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