On World AIDS Day 2021, the Government announced its HIV Action Plan and £20 million to expand opt-out testing over three years. While the plan says ‘opt-out testing in high and very high prevalence areas must rapidly increase’, the first year’s funding is only enabling this innovation in A&E (accident and emergency) departments in extremely high HIV prevalence areas.
The HIV Commission founders – Terrence Higgins Trust, National AIDS Trust, the Elton John AIDS Foundation – with the wider HIV sector and its supporters were key to making this happen.
As this massive change gets implemented this month in Brighton and Hove, London, Manchester and Salford, this is how the HIV sector and our supporters made it happen.
Despite 40 years of progress, the latest HIV figures show 42% of all people diagnosed with the virus were diagnosed late in 2020. This is an unacceptably high level, but this appalling figure hides huge inequalities. 29% of gay and bisexual men and 54% of heterosexuals of Black African ethnicity were diagnosed late, a clear difference between the two most affected groups.
The status quo is clearly not enough – for those in dire need of a diagnosis, nor the country’s aspiration to end new cases of HIV by 2030. People, too often, are presenting at hospitals and GPs but their undiagnosed HIV is not being seen or detected. Change is needed: HIV testing must become mainstream in the NHS.
Opt-out HIV testing
Around 2000, opt-out HIV testing was implemented in maternity services. With a more than 99% take up, this innovation has become mainstream and has eliminated vertical transmissions of HIV (from mother to baby).
Following the example of maternity service and after painstakingly work, the National Institute for Health and Care Excellent published guidance in 2016 recommending:
In areas of high [2-5 per 1000 adults] and extremely high prevalence [>5 per 1000], they recommend HIV testing on admission to hospital, including emergency departments, to everyone who has not previously been diagnosed with HIV and who is undergoing blood tests for another reason.
There were similar directives for primary care too. Building on the work of NICE, the British HIV Association, British Association for Sexual Health and HIV, and British Infection Association issued opt-out testing guidelines [pdf] in 2020. Together they formed the basis of the HIV Commission’s flagship recommendation:
Opt-out rather than opt-in HIV testing must become routine across healthcare settings, starting with areas of high prevalence.
This was welcomed by a cross-party group of MPs in the House of Commons on the day of the final report launch.
Trialing a normalised HIV testing approach
While all this was taking place, our friends at EJAF created a Social Impact Bond in Lambeth, Southwark and Lewisham with the support of the National Lottery funders – three of the highest prevalence Boroughs in the country. This has had extraordinary results, diagnosing 206 people with HIV and reengaging 253 people in HIV care. This single intervention has done more to address the health inequalities in those undiagnosed than almost any other – 40% were women, compared to 28% nationwide; 54% are Black African, Black Caribbean or Black Other, compared to 22% nationwide.
Other places around the country including Blackpool, Croydon and Leeds trialed opt-out A&E testing; this was paid for from local funds.
How the HIV sector and its supporters made this happen
1. National HIV Testing Week 2021 as a platform
HIV organisations engaged MPs about opt-out testing and made the case for opt-out testing during the Big Tent event with Jo Churchill and with MPs who did an HIV test.
2. Letters from Brighton and Blackpool MPs and councillors
Both cities experience high rates of new HIV diagnoses but the demographics are different in each. Brighton has high rates of gay, bisexual, men who have sex with men diagnosed and Blackpool has general poor health outcomes/deep inequalities.
Blackpool hospital started delivering opt-out in 2021 and shared their learning during National HIV Testing Week. MPs from both cities wrote to Matt Hancock urging support for opt-out HIV testing in A&E units – we supported both of these.
3. Launched the HIV Action Plan ‘worthy of its name’ campaign and Comprehensive Spending Review campaign
Together, we got over 5,000 actions taken by supporters, including over 200 people living with HIV writing directly to the Chancellor and Health Secretary, urging a scaling up of testing to curb late diagnoses.
Along with NAT and EJAF, we demanded MPs write to the Health Secretary on behalf of constituents to back opt-out HIV testing. MPs from all main parties backed the campaign and wrote to Matt Hancock urging this be included in the HIV Action Plan.
At Conservative conference 2021, delegates unanimously passed a motion during an LGBT+ Conservatives fringe event supporting opt-out HIV testing. We made the case to key decision makers during the conference, including the Minister for Equalities Mike Freer, to deliver this in the new HIV Action Plan.
A campaign win!
In December 2021, the UK Government announced it would be funding opt-out HIV testing in all areas of very high HIV prevalence with a £20m financial package. This was a huge win and demonstrated the impact of our joint campaigns with NAT, EJAF, the HIV sector and our supporters. By standing together, we made the case for opt-out HIV testing and now this is about to be delivered.
Thank you for your support!
Opt-out HIV testing will be rolled out across all of London, Brighton, City of Manchester and Salford from April 2022 – just over one year since we started our first campaign on this. We’re involved in shaping this roll out; it’s vital that staff are fully trained and have knowledge about what HIV looks like in 2022.
Important people to thank
This win did not come in a vacuum. We are immensely grateful to the Secretary of State Sajid Javid, Public Health Minister Maggie Throup and Chief Executive of NHS England Amanda Pritchard for agreeing to this change. While we want every announcement to go further and receive more financial support, £20 million is the first new funding for HIV testing in nearly a decade and this change will make a massive change for many people’s lives.
While it would undoubtedly not have happened without the support of these health leaders, we know from private meetings and informal conversations that we owe a debt of gratitude to special advisors, civil servants, NHS England employees, public health officials and clinicians across the country to make this happen. While they go unnamed, they do not go unappreciated.
Finally, we couldn’t get issues like this on the agenda with supportive journalists and our wider supporters. Whether you send private letters to decision-makers or share your support on social media, it is all part of winning change. We couldn’t do it without you.
We want to see opt-out HIV testing made available in other parts of the country, in line with BHIVA/BASHH and NICE guidelines.
All high HIV prevalence areas outside of London should be providing opt-out HIV testing in A&E departments – at the moment the government has not indicated it will make this change, but we will soon start to see the impact of opt-out in the very high prevalence areas it is funding. We believe this will make the case for further investment and even greater change.
Together we can have opt-out HIV testing across the NHS, in every corner of the country.