PrEP (pre-exposure prophylaxis) prevents people getting HIV and is almost 100% effective when taken as prescribed. It provides protection to the many people who continue to be vulnerable to HIV, both in the UK and around the world. The drug has been proven to be cost effective when measured against the cost of lifelong HIV treatment and care.
PrEP has already had an impact on HIV rates in the UK, with Public Health England clear that PrEP, alongside other HIV combination prevention interventions, has played a part in reducing HIV transmission – particularly among gay, bisexual and other men who have sex with men (GBMSM).
But PrEP has the potential to do so much more - to be the driving force behind England meeting the target of ending new HIV transmissions by 2030.
Yet there are major obstacles in the way of this potential.
PrEP can be an important HIV prevention tool for many people at risk of HIV. From gay and bisexual men, to women, Black African and other ethnic minority communities, and trans people.
Yet these communities are currently not equally benefiting from PrEP.
While awareness and uptake of PrEP in gay and bisexual men is high (but could always be higher), HIV Prevention England has found that Black African men and women are less likely to know about PrEP and may have misconceptions about what it means, who it is for and how to access it. This is despite making up 44% of new heterosexual HIV diagnoses in 2018 [pdf].
This is not equality. This is not enabling all those who could benefit from PrEP being able to equally access it.
Between 2018 and 2019, a PrEP Commissioning Planning Group was established, jointly chaired by NHS England and the Association of Directors of Public Health and reporting to the Impact Trial PrEP Oversight Board. The group drafted a document: “Preparing for the commissioning of Pre-Exposure Prophylaxis (PrEP) in England: Recommendations of the PrEP Commissioning Planning Group”. This document was not published, yet it includes important recommendations around ensuring equitable access to PrEP in England that we believe the Government must address.
The burden of HIV is not evenly distributed, nor is the use of PrEP as a method of HIV prevention. The principle of equity – across different risk and demographic groups, and geographically – must be evident throughout routinely commissioned PrEP programmes: from knowledge and creating demand in at-risk individuals (e.g. via targeted health promotion programmes), to access, to uptake, to use, and importantly, in outcomes. In line with this principle, provision of various aspects of PrEP must be proportionate to need.
- A national HIV PrEP programme affords the opportunity to champion equality throughout the delivery of PrEP and strengthen relationships not only with gay and bisexual men but especially other groups at high risk of HIV acquisition who may not otherwise engage with sexual health services.
- A national HIV PrEP programme must go beyond the provision of drugs and adopt a whole system approach which, focusing on individual rights and choice, identifies those at risk of HIV who could benefit from PrEP but who are not accessing it currently; helps those at risk to identify appropriate prevention options; and supports their journey along it.
- A national PrEP programme must also understand and seek to address the structural inequalities that drive inequity in PrEP access. These include working to address community-level, socio-economic and cultural factors.
- To be effective, the comprehensive PrEP programme will need a novel, innovative approach (not just ‘continue’ or ‘within the current’); for activities to occur both within and outside specialist sexual health services where PrEP will be delivered and be undertaken by community organisations and non-GU clinicians.
- Costs of introducing PrEP must include the need for enhanced community mobilisation and engagement, especially for Black African men and women, women of other ethnicities, trans people, younger and BME GBMSM groups, and other underserved groups. It must also focus on increasing awareness of PrEP in young people.
The need for additional pathways to ensure equity of access should consider primary care (including non-traditional delivery e.g. app-based provision of GP services), maternity, and termination of pregnancy services. These services must be co-designed with communities to examine the acceptability of potential pathways to be commissioned as well as looking at delivery. As the national PrEP guidance from BASHH and BHIVA states, “limiting provision of PrEP to level 3 sexual health clinics risks widening health inequalities disproportionately among black, Asian, and minority ethnic (BAME) populations.”
National and local health promotion activity must address the need for additional information on PrEP to facilitate equity of access.
We also support the PrEP Commissioning Planning Group’s recommendation that a national PrEP Equity Audit tool should be used to ensure that no communities are being left behind in accessing PrEP.
For too long, access to PrEP has not been even. With the current roll out of routinely commissioned PrEP, action must be taken to ensure that all who can benefit from PrEP are aware of it and can access it.
Inequity in access to PrEP is not acceptable.
Signatures
Ian Green, Chief Executive, Terrence Higgins Trust
Deborah Gold, Chief Executive, National AIDS Trust
Will Nutland, Co-founder, PrEPster
Amanda Ely, Chief Executive, CHIVA
Michelle Ross, Co-founder, cliniQ
Deryck Browne, Chair, One Voice Network
Sophie Strachan, Director, Sophia Forum
Denis Onyango, Programmes Director, Africa Advocacy Foundation
Edwin Sesange, Director, Africa Equality Foundation
Maureen Ndawana, Community Engagement Officer, The Africa Health Policy Network
Amdani Juma, Partnership and Community Director, African Institute for Social Development
Jeni Hirst, Director of Service Development and Delivery, BHA for Equality
Emma Colyer MBE, Director, Body & Soul Charity
Rami Ghali, Chief Executive Officer, Brigstowe
Dr John McSorley, President, British Association for Sexual Health and HIV
Dr Laura Waters, Chair, British HIV Association
Helen Marshall, Chief Executive, Brook
John McKernaghan, Chief Officer, The Brunswick Centre
Toni Jacobs, Director, Derby Pride CIO
Ryan Whittington, Manager, Derbyshire LGBT+
Destitute Asylum Seekers Huddersfield
Mags Davies, Chief Executive, The Eddystone Trust
Anne Aslett. Global Chief Executive Officer, Elton John AIDS Foundation
Mesfin Ali, Health Services Manager, Embrace UK Community
Faculty of Sexual and Reproductive Healthcare
Siobhán Lanigan, Chief Executive, The Food Chain
Darren Knight, Chief Executive, George House Trust
Nadia Naous, Chair, HIV Pharmacy Association
Jide Macaulay, Founder & CEO, House Of Rainbow
Simon Collins, Advocate, HIV i-Base
Greg Owen, Co-founder, iwantPrEPnow
Pip Gardner, Chief Executive, The Kite Trust
Paul Martin OBE, Chief Executive, LGBT Foundation
Ian Howley, Chief Executive, LGBT HERO
Simon Jones, CEO, Living Well International CIC
Monty Moncrieff MBE, Chief Executive, London Friend
Melanie Tranter, Chair, The Make A Difference Trust
Tom Doyle, Chief Executive, Yorkshire MESMAC Group of Services
Dr Greg Ussher, CEO, METRO Charity
Matthew Hodson, Executive Director, NAM aidsmap
Shaun Watson, Chair, National HIV Nurses Association
Parminder Sekhon, Interim CEO, Naz Project London
Chris Williams, Service Lead, Plushealth
Mark Santos, Director, Positive East
Silvia Petretti, Chief Executive, PositivelyUK
Anthony West, Specialist Support Manager (Sexual Health), Renaissance UK
Chris Woolls, Director, River House Trust
Tessa Willow, Chief Executive, Sahir House
Tom Hayes, Trustee, Saving Lives UK
Laina Cores, National Director, Sexpression:UK
Karen Skipper, CEO, Spectra
Nancy Kelley, Chief Executive, Stonewall
Sarah Macadam, CEO, Thames Valley Positive Support
Salim Khalifa, Director, Trade Sexual Health
Phyll Opoku-Gyimah, Executive Director and Co-Founder, UK Black Pride
Alex Sparrowhawk, Chair, UK-CAB, the HIV treatment advocates network
Individuals
Takudzwa Mukiwa
Neil Reavey
Ralf Rasmussen
Christopher Spelman
Jacob Livingstone
Sam Mercadante
Rainer Jurkat
Paul Hayward
Serena Cavanagh
Dr Vanessa Crawford
Aled Osborne
Samuel Isaacs
Liam Watson
Joanna Shepherd
Adam Pace
Matt Clee
Emma Zurowski
Kia Hinds
India Henry
Victoria Walton
Matthew James Walsh
Michaela Walsh
David E Smith
Wai Ming Lee
Matthew Hughes
Ryan Seville
Hayley Morrison
Adrian Machel
Selina Whiteley
Martin Harris
Amanda Floyd
Dennis Macalino
Wiebke Koeppen
Karen Freer
Maria Cacho
Sarah Jones
Christian Ratcliffe
Paul Taylor
Kathryn Bristow
David Mawson
Owen Blacker
Keith Kent
Jonathan shearn
Jason Lew
Jack Gomm
Emily Fisher
Beren Maddison
Rensa Gaunt
Emma Mendes da Costa
Susannah Osmond
Patrick Fitzpatrick
Jack Taylot
Hannah Pittman
Arron Carr
Sharon Tyler
Ria Patel
George Pope
Kieran Scholtz
James Mitchell
Liam Swanston
Jamie Hinkley
Eleanor Griffin
Dave West
Scarlett Ballantine
Caroline Robinson
Kaden Foley
Casey Knight
Richard Hodgson
Shiv Smith
Kate Gray
Spencer Blackwell
Catherine Muxworthy
Jack Howell
Elizabeth Hawke
Adanyina Wemuye Ernest
Gareth Roberts
Mark Shields
Gillian Price
Liam Beattie
Dr Anthony Drummond
Daniel Gomez
Ewan Hindes
Emma Kosmin
Ralph Bogard
Shellie Hullah
Quentin Yeung
Ed Firth
Shang-Yu Lee
Lucie Hannah Cox
Christopher Brown
Felicia Bamgbose
Anna Bonsall
Rachel Cotton
Ryan Montgomery
Sarah Phillips
Dr Ellen Welch
Joe Vincent
Hanno Hinkelbein
Martha Dunkley
George Aristotelous
Andrii Chernyshev
Sarah Gosling
Ryan Westwell
Ashley Brown
Christian Mercer
Christopher Owen-Brooks
Giugiu Barsuola
Hugh Tonks
Alison McCants
Kathryn Wolf
Abigail Toni Weiler-Grove
Neil Fever
Ralph Beardmore
Raymand Mallare
Laura Beck
Stewart O'Callaghan
Laura Ferrara
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