As the year draws to a close, it's the perfect time of year for a little bit of a look back at what happened in 2022. Some of what happened this year were expected (the launching of opt-out testing in high prevalence areas in England, for example) while others absolutely weren’t (Europe’s monkeypox – now mpox – outbreak affecting predominantly gay and bisexual men). 

This year we also launched our new ambitious strategy, Together We Can, with a clear commitment to tackle the inequity seen in HIV and sexual health. Plus, we welcomed three new trustees to our Board – Councillor Asher Craig, Yomi Olusunle and Dr Carla Barrett.

But, anyway, below is a little non-exhaustive round-up of what we were up to at Terrence Higgins Trust in 2022.

Terry Higgins died on 4 July 1982, and his partner Rupert Whitaker and their close friend Martyn Butler set up our charity to share information, protect communities and ultimately save lives. Rupert and Martyn were honoured this year with OBEs for their work to save thousands and thousands of lives. 

Four decades on, we have spent much of the year properly celebrating incredible Terry’s legacy. Including an event in the Senedd to mark the anniversary in Terry’s country of birth, with First Minister Mark Drakeford launching the consultation on Wales’s draft action plan for ending new HIV cases. This included the unveiling of a brilliant new portrait of Terry by the talented Nathan Wyburn, based on a previously unseen school photo of Terry growing up in Haverfordwest. 

We also released our brand new data showing many people’s views of HIV remain stuck in the decade when Terry died, rather than based on all the incredible progress that’s been made since. We also held a gala to mark 40 years of our charity, hosted by Stephen K Amos with a performance from Jake Shears, and to ensure we’re able to provide continuing support in the years ahead. 

We worked closely with pilot James Bushe (and several other pilots living with HIV) and naval officer Lieutenant Commander Oli Brown to challenge policies within aviation and the military based on outdated HIV information and wrongly restricting careers. 2022 was the year that promises became policy. 

In June, the UK Civil Aviation Authority announced new policies that end the HIV discrimination faced by pilots having full careers, which was closely followed up by groundbreaking changes in the UK’s armed forces. That included the removal of the ban on HIV-positive people joining the military and ensuring people living with HIV who have an undetectable viral load through treatment can be fully deployable. 

A huge thank you to James, Oli and all the others who helped to ensure these policies are reflective of HIV today. 

In April, opt-out HIV testing in A&E departments in areas with very high prevalence started – a game-changing approach to HIV testing which would've happened without our supporters. Pilots showed those diagnosed in A&E were more likely to be heterosexual, women and of Black ethnicity than those diagnosed in sexual health departments.

On World AIDS Day, the impact of this approach was revealed with more than 100 new HIV diagnoses and over 60 people who knew they were living with HIV being returned to HIV care. These are remarkable numbers and there’s a clear case for expanding opt-out testing to the 30+ areas in England classed as having high HIV prevalence. 

It’s clear opt-out testing is good for people’s health, stops onward transmission and will save the NHS money by diagnosing people before their health is in crisis. This fight will be a key part of 2023 for us. 

In August, the Government announced that victims of the Contaminated Blood Scandal were finally to receive compensation after a 40-year battle.

During the 1970s and 1980s, 30,000 people with haemophilia and other bleeding disorders were given blood with HIV and hepatitis viruses. The scandal has been called the biggest treatment disaster in NHS history. Thousands have died – since the Infected Blood Inquiry was announced in July 2017, until February this year, 419 people have died. Those who were given contaminated blood products are dying at a rate of one every four days.

The interim payments are the first time compensation has been paid after decades of campaigning by those affected, and while it is welcome news, there are many people such as bereaved parents, carers and other dependents, who miss out. The fight for justice for all those impacted continues. 

Elizabeth MacRae, who lost her father as a result of the scandal, spoke brilliantly at our World AIDS Day reception in front of key decision-makers. 

Our joint report Not PrEPared revealed two thirds (65%) of people who want to access the highly effective HIV prevention drug PrEP (pre-exposure prophylaxis) are unable to do so.

Data from 1,120 people in England struggling to access PrEP found the most common waiting time for a PrEP appointment at a sexual health clinic was 12 weeks (35%) – with more than half of those seeking appointments waiting more than 12 weeks to be seen (57%). People trying to access PrEP for the first time faced the biggest hurdles (68% reported access issues).
 
This is unacceptable, and we’re working with decision-makers at all levels to ensure progress, with our CEO Ian Green commenting: 'Two years ago we celebrated PrEP becoming available on the NHS in England. But the reality is that people are still being turned away from accessing the drug for HIV prevention, while many others are facing unacceptably long waiting times.'

We also released our HIV in England: Addressing areas of unmet need report.

2022 saw a monkeypox outbreak in the UK, with gay and bisexual men most impacted. We stepped up to utilise our expertise in working with this group to provide advice and information. Thankfully numbers are now much lower, but gay and bisexual men are still able to come forward for either first or second doses of the vaccine.

We also worked with partners to campaign for an improved response to protect the health of those affected and for proper support for sexual health services who had to handle testing and vaccination without additional support or resourcing. 

National HIV Testing Week returned to get more people testing for HIV. The week saw three Black MPs who represent some of the boroughs with the highest HIV prevalence visited a hospital in Lewisham to find out more about opt-out HIV testing, while some of the queens from Drag Race UK showed how easy testing is. 

Breaking Barriers, our award-winning project working with women of African and Caribbean heritage to tackle HIV stigma was launched in collaboration with African Families in the UK.

Our patron Gareth Thomas was announced as People’s Postcode Lottery’s Postcode Hero, with Gareth donating the £250,000 prize to support our life-changing work. We also continued to support Gareth’s campaign Tackle HIV, including a ‘myth-bus’ tour to take up-to-date HIV information to the public. 

Cheddar Gorgeous spoke eloquently about HIV stigma, PrEP and the shadow of HIV on this season’s RuPaul’s Drag Race UK, including their incredible pink triangles runway look in homage to the Silence=Death project. They then went on to raffle this look to raise funds for us and George House Trust. 

Oliver Sim from The xx released his beautiful track Hideous about his HIV diagnosis at just 17 and the shame he felt. In many interviews about his music, he has spoken about the realities of HIV today. Decades on, he no longer feels that shame and proudly wore his red ribbon on World AIDS Day. 

We recommitted our support for trans people, including our work to ensure trans people aren’t left behind as part of ending new HIV cases by 2030 and to ensure better sexual health for all. 

Our archive of 40 years of materials on HIV and sexual health was made publicly available with items now available to access from the Bishopsgate Institute. It’s a real treasure trove showing how things have changed over the decades. 

Just to repeat: that was a non-exhaustive list of 2022, but hopefully shows some of the progress that was made during a busy year.

In 2023, we’re already looking forward to National HIV Testing Week, which kicks off on Monday 6 February to shout about how quick, easy and convenient HIV testing now is. The year will also see us appoint a new Chief Executive to lead our work after Ian Green announced he is to step down after seven years.  

While our campaign continues to see opt-out HIV testing – and all its benefits – widened to include the 30+ A&Es in areas with high HIV prevalence, like Derby and Liverpool. 

We also know more needs to be done to ensure everyone living with HIV in the UK is linked to an HIV clinic to ensure they have the support they need and access to treatment. The COVID pandemic increased the number of people not linked to care, and this needs reversing and surpassed to support people living with HIV to live well – and to end new HIV cases by 2030. 

As always, thank you for your support in 2022 and please stick with us in the year and years ahead.