I’ve been inundated with lovely, supportive messages and congratulations all night and all morning.
There are a lot of questions about this PrEP implementation study that people quite rightly would like answers to.
The leading question at the moment is “Why do we need another trial?”
It’s a very valid and justified question and indeed echos what I have been screaming most of this year. This study will investigate how we put PrEP to use in a real life setting as a national public health intervention. Previous studies like PROUD and IPERGAY helped us understand that PrEP works really well, if taken as instructed.
This trial is about how we roll PrEP out.
My initial reaction was: It’s a start.
It’s not ideal but it’s a start.
I welcomed the announcement but I feel the need to publicly ask more questions because ultimately it means that we still have no proper PrEP commission for 3 years and the rest of the world is looking to us so we need to keep them and their agendas in the equation too.
I want to see something built into this that really tackles and addresses inequalities and recruits those that really need PrEP but aren’t able to afford it or don’t know about it.
What inevitably will happen is a mass migration of PROUD study participants and those users currently self-sourcing or utilising PEP as PrEP to populate this allocation. I’m committed to not further perpetuating the health and HIV prevention inequalities of other at risk groups outside of London and urban MSM (men who have sex with men).
I want a dedicated focus on BAME (black and minority ethnic groups) and trans* people.
I also want a clearly laid out and confirmed willingness from NHS England and Public Health England to proactively review this trial after 12 months with a view to finding budget for an additional contingency of a further 5000 (or more) participants. What I don’t want is to find ourselves 18 months in and at our capacity and then having to get into the whole wrangle, negotiating, feet dragging and complacency yet again. That would really stall the momentum that we will have gathered.
I think 10,000 participants is better than what was originally offered in the spring but we can always do more. Australia have expanded their PrEP trials. This can be done.
As a result of this provision we are going to see the number of new HIV diagnoses drop, of that there is no doubt. What I don’t want to happen at that point is for the focus to then shift to those achievements and ‘laurel resting’ to begin. Instead it should be an incentive and motivation to do more.
This announcement feels like a change in gear. It feels like an investment in actually trying to end new HIV infections in the UK instead of what we have previously seen from our health care system which has been lack lustre firefighting and band aid prevention.
I want NHS England to commit to a full commission by the end of this trail now so that we don’t have a repeat of what we saw with PROUD and their participants being exited from a study with no further access to PrEP. This needs to be in place and functioning long before the end of this trial so we have a seamless crossover for participants.
Those are my initial thoughts. I am meeting with our steering group and the larger United4PrEP coalition group this week and we will have plenty to discuss. I will update you all with more information when it is available.
iwantPrEPnow and PrEPster are fully committed to working with NHS England and Public Health England to make the best of this opportunity and we hope to be closely involved with the planning and workings of this trial.