By George Westwood

2022 has been a big year for us at National AIDS Trust. We have continued to work tirelessly to ensure that HIV does not stand in the way of health, dignity, and equality. Along the way, we've had some major victories: we launched two big campaigns, published a report which helped to shift the conversation around PrEP, and continued to build on our policy work from previous years, pushing for reforms around mental health and migration.

To see out the year, here is a summary of five of our big projects of 2022. We're looking forward to 2023 and will continue to make lasting policy change that secures rights for people living with HIV.

 

Opt-out HIV testing

In April, as part of the government's commitment to end new HIV transmissions in the UK by 2030, opt-out testing was rolled out across 33 different hospital sites. This meant that, across a series of areas with very high prevalence of HIV, every single person who came into A&E and needed a blood test was also offered an HIV test. The money for this pilot was pledged as part of the HIV Action Plan – released on World AIDS Day last year

As we predicted, the pilot was enormously successful. The resulting data, released just before World AIDS Day, has proved beyond doubt that opt-out HIV testing in emergency departments works. In the first 100 days of testing, 128 people were newly diagnosed with HIV, and a further 65 people who were not currently engaged with HIV care were found. This equates to more than one person per day. As well as being cost-effective, the programme will almost certainly save lives. Considering how important early diagnosis is to long-term health outcomes, the case for rolling out this scheme more widely could not be stronger. But to do this will require further funding.

According to Danny Beales, our Head of Policy & Campaigns, “the Government now has to expand the pilot without delay, from Bristol, to Birmingham. Every major town and city with higher HIV prevalence should be running opt-out testing in hospitals.”

In the year to come, we will continue to campaign for the roll out of opt-out testing across the country.

The launch of a new service

In the middle of 2022, we were awarded funding from The National Lottery Community Fund to set up a discrimination support and advice service.

The service provides support and advice to people living with or affected by HIV who have faced discrimination, with it aiming to allow people living with HIV to be free of discrimination based on their HIV status.

Harriet Mason, our Discrimination Caseworker, said: "In the short time since launching the Discrimination Service, we have already supported over 20 people facing HIV-related discrimination including in employment, healthcare settings and private services. This shows how vital and needed this service is to directly support individuals and fight for policy change to prevent future discrimination."

You can find out more about the support service here.
 

Fertility rights campaign

In August, we launched our campaign to secure equal fertility rights for people living with HIV. As it stands, the system is blatantly discriminatory: heterosexual couples where one or both partners are living with HIV can access fertility treatment, but LGBTQ+ people can’t. Regardless of their sexuality identity, people living with HIV cannot donate eggs or sperm to a loved one to help them start a family.

It must be stressed that there is no justification for these policies, which are based on outdated and disproven assumptions. There is zero risk of the virus being transmitted through fertility treatment, and people living with HIV should be entitled to the same opportunities to start a family as anyone else.

Since the launch of the campaign, over 850 people have signed our petition, and we have made significant progress with government stakeholders to overturn this discriminatory and outdated law.

This World AIDS Day, Wes Streeting, Shadow Health Secretary, also backed our campaign, committing Labour to push for changes that would ensure that everyone living with HIV has equal access to fertility treatment.

Kat Smithson, Director of Policy & Communications, said: "The enormous public response to our campaign has demonstrated the need to overturn this outdated law which is based on stigma and not science. Our ongoing advocacy on this is making headway and we believe we are well on our way to ensuring that people living with HIV are afforded the same fertility rights as those who are not."

 

Policy victories

Influencing policy can be a long process, but we are never happier than when we see our recommendations finally being implemented. This year, a number of our campaigns came to fruition.

Last year, we released our HIV and mental health report – which found that NHS Psychological Therapies (IAPT) were not adequate for people living with HIV. We know that people living with HIV are disproportionately affected by poor mental health, and our report revealed that 40% of people living with HIV accessing IAPT did not see an improvement in their mental health after care. Four fifths of respondents to our survey said that their mental health problems were related to living with HIV, yet less than half described their therapist's understanding of HIV as quite or very good. Over a third did not feel their therapist understood the ways in which HIV affects mental health.

Based on recommendations that we made, IAPT has committed to creating an e-learning module for psychological therapists to better understand HIV. The module will look at what HIV is, the impacts it can have on mental health, and how this information can be implemented within the structure of NHS IAPT services. HIV-literate mental health support being available on the NHS is crucial in ensuring that people living with HIV can receive appropriate care and treatment without fear of stigma and discrimination. The module is a huge win in achieving this aim!

Oluwakemi Agunbiade, Policy & Campaigns Officer leading on the project, said: "The commitment by IAPT to create a HIV e-learning module is a step towards recognising the unique impact a HIV diagnosis can have on your mental health. When people living with HIV still experience social and intracommunity isolation, discrimination, anxiety and depression linked to their status, they should have confidence in the support available to them and that only happens when people living with HIV see their issues with mental health programmes being responded to and taken seriously."

 

Collaborating across the sector

At National AIDS Trust, we’ve collaborated with sector partners on various projects throughout the year, including our landmark Not PrEPared report which launched in November to a flurry of media attention.

The research, which we conducted alongside Terrence Higgins Trust, PrEPster, Sophia Forum and One Voice Network, showed that two thirds of people who wanted to access PrEP were unable to do so.

One respondent to our survey reported acquiring HIV after being denied PrEP, while many others encountered mental health problems as a result of not being able to access this life-changing treatment. We found serious racial and gender disparities in terms of who was accessing PrEP, with no local authorities reporting more than a tiny handful of women doing so. More broadly, the research illustrated serious problems around the capacity and resources of sexual health services. 

PrEP is one of the effective tools that we have in order to end new HIV transmissions by 2030, but the report revealed we are not effectively using it to curb transmissions. We still have a long way to go, but on the plus side, we know exactly what we need to do to address these problems.

Adam Freedman, Senior Policy & Campaigns Officer who worked on the report, commented: "The data provided by the community, clinicians and local authorities that underpinned the PrEP report was extremely troubling. The fact that only 35% of people who attempted to access PrEP were able to do so is deeply worrying, as were the clear gender and ethnic disparities in PrEP access. We are strongly campaigning the Government to take the evidence identified in the report seriously - because PrEP is a key tool in our fight to reach zero new HIV transmissions by 2030".

These comments were echoed by our Chief Executive, Deborah Gold, who said: "without action, we cannot meet the national objective of ending HIV transmissions by 2030."

You can read the full Not PrEPared report here.