New Terrence Higgins Trust resources developed for and by trans, non-binary and gender diverse people

Little is known about the sexual health needs and knowledge of trans and non-binary people making it challenging to design effective health promotion and clinical services for them. In November 2019, Terrence Higgins Trust conducted a survey in sexual health and HIV knowledge, attitudes and experience which aimed to address this.

Survey demographics

The survey was disseminated online via target advertising and through the charity’s social media channels. The survey captured experiences through quantitative and qualitative data. A total of 223 responses were collected, of which 208 were suitable for analysis.

Respondents could select multiple answers to how they described their gender. Most used more than one term or described it in multiple ways:

45% identified as non-binary
31% trans man
15% trans woman
56% genderqueer/fluid/non-conforming
16% other: trans masculine/masc, demigirl/boy, trans, neutrois, androgyne.

Nine individuals identified themselves as intersex. The age range of participants was 16 to 72. The majority of respondents described their ethnicity as White British (174).

Survey results

The survey identified a clear need to provide trans and non-binary people with sexual health information and raise awareness of the importance of testing for HIV and sexually transmitted infections (STIs):

Almost half of respondents (96) had anal/vaginal/frontal sex without a condom in the last six months; 35 had never tested for HIV and 13 had tested over two years ago.
Nearly half of all respondents (101) never tested for HIV.
33 respondents had had an STI other than HIV (16%).

Findings and recommendations for creating sexual health resources for trans and non-binary people

The survey results produced clear themes and actions to address and inform a sexual health resource for the community.

Language

Should reflect thr range of gender identities and sexualities.
Must use representative non-gendered language.

Terminology

Must avoid gendered anatomical/medical vocabulary and phrases for body parts.

HIV transmission and treatment

A lack of knowledge was identified regarding routes (bodily fluids that might contain HIV), testing and HIV treatment.

Promotion of regular testing, even if people consider their sexual practices are safe, using a ‘best to know your status’ approach.
Ensure the community are aware of home testing options (self-sampling and self-testing kits) so that individuals know where to access test kits, their ease of use and reliability.
A need to promote the effectiveness of HIV treatment, and Treatment as Prevention (TasP).

HIV Prevention: PrEP/PEP

There was an overall lack of awareness of these prevention technologies. Resources need to:

Raise awareness of the difference between PrEP and PEP.
Provide information on where to obtain PrEP and PEP.
Provide the correct dosing requirements and methods of PrEP for trans individuals and individuals who have a vagina/front hole.

STIs

STI information should cover common STIs, how they are transmitted, their symptoms, and testing and treatment options.

Additional concerns identified in the research

Additional areas for consideration should include:

Sex, drugs and alcohol.
Consent, including sex and the law, and information and support for people to understand what appropriate sexual boundaries are and when a crime may have been committed against them so that they know how and where to report it.
Signposting to relevant agencies, including trans-specific clinical and therapeutic services.

Improving access to sexual health services

Respondents gave a number of recommendations to improve access to sexual health services (SHS). Practical measures include ensuring that diverse gender options are available on forms and systems; displaying LGBT+ posters and materials in clinics so people are aware they are in a safe space; and creating gender-neutral waiting rooms.

The other key recommendations focused on training for SHS colleagues. Areas of focus identified included:

Up-to-date and inclusive information regarding trans issues and LGBTI people.
Address the impact of assumptions of patients being heterosexual, cisgender and/or non-intersex.
Online training on trans issues available at gires.org.uk with modules for GPs etc.
Respectful use of pronouns.

Key topics for inclusion in sexual health resources

As well as standard sexual health information tailored towards trans people, respondents wanted to see information on key subjects including: trans-specific clinics; raising awareness of consent; sex drive, sexuality and transition; body image and feeling good about yourself; transition and relationships; hormone treatments; contraception, fertility and pregnancy; safer sex; and upper and lower surgery.

Other areas suggested included: mental health and sex; sex and dysphoria; prevention with trans genitalia; HIV treatment interactions with hormones; cervical screening; sexual health information for women who have sex with women.

New resources

Trans and non-binary people co-produced and feature in the new online resource and information leaflet. Ensuring the resource is trusted and represents the diversity within the trans community is key to its success.

Celebrating and reflecting the diversity within the trans community, it features eight trans and non-binary people from different cultural backgrounds with different body types and identities.
The new health information is directed to the needs of trans, non-binary and gender-diverse people and provides up-to-date HIV, sexual health and contraception information and advice. This includes the impact of hormones and surgery, considerations when taking HIV prevention pill PrEP and how to navigate happy, healthy sex.

Visit Terrence Higgins Trust’s new trans-specific sexual health pages.

Get ready for National HIV Testing Week

National HIV Testing Week starts on Monday 1 February 2021.

National HIV Testing Week is a campaign to promote regular testing among the most affected population groups in England. This helps to reduce the number of people living with undiagnosed HIV and those diagnosed late.

The campaign continues last year’s success and features celebrities and influencers promoting ‘Give HIV the finger: a finger-prick test is all it takes’.

We are inviting organisations to participate by running online and virtual campaign events and promoting HIV testing and prevention services with our support.

How to get involved

In light of the COVID-19 pandemic, we encourage you to promote testing at home to your local populations and community.

To find out more about how you can support this exciting event download and read our National HIV Testing Week 2021 campaign briefing [PDF].

Resources

Free resources to promote HIV testing this National HIV Testing Week are now available to order.

NEW! All printed resources are also available to download as digitised PDFs for use in activities including online support groups and virtual outreach events.

Order your resources now.

How community-led testing can help us end HIV transmission

This European Testing Week, National AIDS Trust reflects on the vital role of community-led testing in helping us to end HIV transmission.

In August, National AIDS Trust launched two new resources to support community HIV testing in England:

Community HIV testing: Intervention design toolkit
Community HIV testing: Evaluation toolkit.

Community HIV testing is vital to the effort to end HIV transmissions in England. Led by community organisations and delivered outside of traditional healthcare settings that may not be accessed by all, community testing can reach a different audience to clinical services [PDF].

Its success in doing so has led it to be recommended in both national [PDF] and international HIV testing guidelines.

As with all HIV testing, community testing aims to reduce the number of people with undiagnosed and late diagnosed HIV. But it also has a much wider set of functions. By being community-led, it helps to break down barriers to talking about HIV, thus normalising HIV testing, reducing stigma, and empowering people to manage their own sexual health.

Community testing provides a gateway to accessing prevention, treatment and care, as well as other services relevant to people’s needs, and can play an important role in linking people into the wider health system.

Impact of COVID-19

Now may seem an odd time to be talking about HIV and community-based testing. COVID-19 has limited the ability of face-to-face services to be delivered, and many community organisations have had to shut their doors and move online. Summer saw some resumption of services, but the current lockdown and ever-changing restrictions have limited capacity and hindered long-term planning. Clinical sexual health services are also operating at a reduced capacity.

Yet we know people didn’t stop having sex with the arrival of COVID-19 and that sexual activity increased with the easing of lockdown [PDF]. Back in June we wrote that the need for judgement-free safe, discreet and accessible services is as high as ever. This will only become truer again as restrictions lift.

Ensuring that varied options for safe and effective HIV testing remain accessible is therefore vital to prevent COVID-19 from undermining progress in ending HIV transmissions. The end of COVID-19 may seem in sight, but we cannot become complacent.

The role of community testing during the pandemic

As COVID-19 transformed the ways healthcare can be delivered, services adapted at speed. Sexual health clinics now conduct much more of their engagement virtually, and there has been an increase in the use of postal testing.

Some community organisations are assisting their clients to conduct these tests remotely. HIV Prevention England (HPE) has produced an excellent Framework for delivering Community-Based HIV and Sexual Health Services during COVID-19 [PDF], which includes guidance on providing services in this way.

While the shift to virtual sexual health services has been necessary, and for many people effective, it’s important to acknowledge the limitations. Not everyone has access to virtual services, and some who do may feel uncomfortable if they lack privacy at home. Fears of judgement or recrimination for breaking COVID-19 restrictions can also deter people from getting tested.

There aren’t easy solutions to these barriers, and the safety of staff and clients is paramount. However, it’s safe to say community testing providers, already working in communities and experienced in involving those not accessing testing elsewhere, have a role to play and are well placed to manage risks carefully.

This was evident at the community testing event we delivered with HPE back in August. There we heard about some of the important outreach and testing that community organisations such as Yorkshire MESMAC had recommenced, with risk management and infection control processes in place to ensure safety.

For a recording of this event, please contact [email protected]

Adapting services to COVID-19 and beyond

National AIDS Trust’s toolkits support the design and evaluation of community testing interventions based on knowing what you are trying to achieve – i.e. your objectives – and who it’s for. The basic principles and stages set out in the toolkits still apply during the pandemic, but providers may have to take additional consideration when making some decisions based on context.

Even with vaccines for COVID-19 on the horizon, there remains a great deal of uncertainty and we still expect to be grappling with varied and changing restrictions across the country in the immediate future.

There are ways to adapt. Through the summer, some organisations made the decision to move client recruitment online (including developing online booking systems which have potential beyond COVID-19). Others reconsidered the locations used for testing and recruitment, with ability to social distance a key factor. Spaces which run the risk of getting crowded or that have poor ventilation should be avoided, and organisations should consider how the closure of venues might impact on where they can operate.

Appropriate personal protective equipment (PPE) and training on management of infection risk must also be in place to protect staff and volunteers. HPE’s framework is an invaluable resource to use alongside the toolkits to advise on the specific safety measures related to COVID-19.

Community HIV testing is about ensuring everyone who needs an HIV test can get one. It is the most marginalised who find it the hardest to access scaled-back services during COVID-19, and we must make sure that no one’s left behind. Agile community-led testing is critical if we are to do so.

National AIDS Trust’s Community HIV testing toolkits were supported by funding from Public Health England’s HIV Prevention Innovation Fund.

European Testing Week 2020: Testing vulnerable populations in COVID-19 restricted contexts

Together with European Testing Week, HIV Prevention England is hosting a webinar on Monday 23 November 2020 looking at testing vulnerable populations during the pandemic.

This interactive session will provide a brief overview of how providers have addressed the challenges and maximised opportunities during lockdown and other COVID-19- restricted contexts to continue to reach particularly vulnerable populations to provide testing for Blood-Borne Viruses, including HIV and Hepatitis.

While this November we are supporting European Testing Week 2020, we remind colleagues that, owing to COVID-19, England’s own National HIV Testing Week has been postponed to 1-7 February 2021.

New HIV diagnoses fall by 10% in 2019

Public Health England (PHE) has released its latest Trends in HIV testing, new diagnoses and people receiving HIV-related care in the United Kingdom: data to the end of December 2019 report [PDF].

The latest surveillance data reaffirms that the UK is continuing to see a downward trend in new HIV diagnoses, but the fall is greater in some key populations than others.

New diagnoses

It is now estimated that there are 105,200 people living with HIV in the UK, of which an estimated 6,600 (6%) remain undiagnosed.

The total number of people newly diagnosed with HIV in 2019 was 4,139. This is 10% lower than the 4,580 diagnosed in 2018 and a drop of more than a third (34%) since the peak of 6,312 reported in 2014.

The biggest fall in new diagnoses is seen in gay and bisexual men (GBM), with PHE reporting an 18% fall from 2,079 in 2018 to 1,700 diagnosed in 2019. Amongst GBM the steepest declines were seen in men who were: White; born in the UK; living in London.

The drop in diagnoses from heterosexual contact was 6% from 1,664 in 2018 to 1,559 in 2019.

Late diagnoses remain stubbornly high, with 42% of people diagnosed late in 2019, this has only decreased by one percentage point since 2018. Calculations comparing their mortality rate to those diagnosed promptly indicate an eight fold increased risk of death.

Disparities in late HIV diagnoses continue to be seen across ethnicity with Black people more likely to be diagnosed late than White, Asian or mixed/other.

Percent diagnosed late in 2019 by ethnicity:

Unknown – 52%
Black African – 47%
Black Caribbean – 46%
Black other – 44%
Asian – 39%
White – 39%
Other/mixed – 35%

Late diagnoses are also higher in older populations, 56% of 50-64 year olds, and 59% of 65 and overs. Only 35% of GBM were diagnosed late compared to 52% of men who were likely exposed to HIV via heterosexual contact, and 44% of women.

HIV care and treatment

For the third consecutive year the UK has surpassed the UNAIDS 90-90-90 targets, in 2019:

94% of people living with HIV were diagnosed
98% of those diagnosed were on treatment
97% of those on treatment had an undetectable viral load.

Continuum of HIV care in the UK graph

HIV testing

HIV testing remains the cornerstone of combination prevention efforts, as newly diagnosed people can access immediate HIV treatment ensuring they can live well and prevent onward transmission of HIV.

In 2019 1.3m eligible people were tested for HIV in sexual health services (SHS), this is an increase of 6% from 2018. Of all those tested via SHS, 18% did so via internet services. Positivity rates in SHS remains stable at 0.2%.

Popularity in internet services has increased substantially with 232,738 people tested for HIV in 2019 via this method, 63% more than in 2018.

Whilst people using internet services were largely similar to those using face-to-face SHS in demographic profile (ethnicity and sexual orientation), there were more likely to be younger, with 81% using internet services aged under 35, compared to 77% in specialist SHS.

PHE’s National Home Sampling Service (NHSS) continues to be a supportive tool in enabling people to access HIV testing. In 2019, 25,514 self-sampling kits were returned to the service with a reactivity rate of 0.5%.

PHE’s ‘Survey of HIV Testing in Community Settings’ reported 35,095 tests and a reactivity rate of 0.5%. People testing through the NHSS were more likely to be GBM and under the age of 25, whereas those testing in community settings were more likely to be Black African and first-time testers.

The next decade

The continued fall in new HIV diagnoses is to be celebrated and it’s crucial that the momentum behind our combination prevention efforts is maintained to achieve the nation’s goal of zero new HIV diagnoses by 2030.

There is no doubt that the COVID-19 pandemic will have impacted HIV diagnoses rates, access to testing and treatment this year. The HIV sector will need to work hard to ensure the efforts of the last ten years are repeated in the next.

The latest data from PHE provides some indication of which areas require attention from the sector, including:

The interrogation of missed opportunities for HIV testing in SHS
Ensuring all of England, not just London benefits from combination prevention methods
Addressing the health disparities linked to ethnicity in relation to late diagnoses and mortality rates
Upscaling the knowledge of pre-exposure prophylaxis (PrEP) in all key populations, not just GBM
A nuanced, cross-sector approach to raising awareness of HIV in order to address numbers of undiagnosed people who aren’t GBM or Black African men and women.

Resources

HIV annual data tables from PHE.