Evidence
Alert

Self-testing for HIV could increase diagnoses in the trans community

Kits for HIV self-testing are an effective and acceptable way of increasing HIV testing among trans people. Existing HIV testing services are often designed around men who have sex with men. This can create barriers for trans men and trans women, who are at high risk of HIV.  Many go undiagnosed as a result.

A review of previous evidence showed that HIV self-testing could increase diagnoses among men who have sex with men and trans people. However, the research included few trans people. The team therefore recruited 118 trans people into a trial of HIV self-testing. They found that HIV self-testing was acceptable to them, and increased the take up of HIV testing, compared to providing information about local sexual health services. 

The researchers interviewed some of the participants about sexual health services.  Many had previously encountered a lack of understanding of the trans experience, been referred to by the wrong pronoun, or found that resources were not appropriate for their anatomy. These negative experiences discouraged them from seeking HIV testing through the usual sexual health services, and may explain why self-testing was more popular. 

The researchers say their study shows the need both for wider provision of self-testing, and better services for trans people.

What’s the issue?

Trans is a general term for people whose gender is different from the gender assigned to them at birth. There is no official figure of how many people in the UK identify as trans, but the current estimate is of between 20,000 and 50,000 people. They are at higher risk of HIV than others, for multiple reasons including social inequality, and barriers to prevention services.

In HIV self-testing, people give themselves a finger prick blood test, process the sample and read their own result. The researchers pooled evidence on self-testing for HIV from 10 studies including 5,486 men who have sex with men and 4,121 female sex workers. Only two of the studies (one from China, one from the US) included trans people (69 trans women and 3 gender queer or neutral). In these two studies, self-testing increased the numbers of trans people having HIV tests.

The researchers wanted to know whether self-testing for HIV would be acceptable to trans people in the UK, and whether it would increase the numbers getting tested. They also wanted to know what barriers this group faces in getting tested for HIV through existing sexual health services.

What’s new?

The researchers recruited 94 trans men and 24 trans women to the study. They were randomly assigned to receive through the post either a HIV self-test kit, or information about their nearest testing centre. They completed a survey after 3 months.

They found that:

    • one in three participants had not been tested for HIV before the study 
    • people who were sent the self-test kit were three times as likely to get tested for HIV, compared to those sent information only - almost all of those sent the kit (43 of 46) had taken a test after three months, compared to fewer (6 of 22) who were offered information 
    • almost all (38 of 39) found the instructions easy to understand, the test simple to use (37 of 38), and all reported a good overall experience.

A smaller group of 20, who used the kit in the first part of the study, were then randomly assigned either to have no further contact, or to receive regular reminders and further self-test kits. Those offered these repeat tests were again three times more likely to test during the following two years, compared to those sent only the first test (though these numbers were small).

None of the participants of the trial tested positive for HIV, probably because of the small numbers included. That means the study cannot say whether or not self-tests lead to earlier diagnoses for trans people who have HIV. But importantly, the researchers did not identify any harms from self-testing, such as people being less likely to be tested for other sexually transmitted diseases. 

Researchers then interviewed 20 people within the study about their previous experience of HIV testing. They wanted to explore unmet needs that might be addressed by self-testing.  Some reported good experiences, and services designed for trans people were highly valued. 

Others had experienced problems such as: 

    • a lack of cultural understanding, skills and empathy of clinic staff, who treated trans people as a burden, addressed them with the wrong pronoun or called their sexual orientation and HIV risk into question
    • clinic pathways designed for men who have sex with men led to offers of examinations or procedures inappropriate for trans people’s anatomy, or recording systems that did not accommodate trans identity 
    • worries that discussing their bodies in HIV clinics would trigger unease about gender identity, especially for those in the early stages of transition.

Why is this important?

The research underlines the need to reach more trans people with HIV testing options that are suitable for them. Self-testing was highly acceptable and could dramatically increase HIV testing in this group without reducing testing for other sexually transmitted infections (STIs). 

However, HIV self-testing is not the only option. People need sufficient social support, and care services in the event of a positive test. They should be able to access clinic facilities for HIV testing that are appropriate, regardless of their gender identity. 

The evidence from interviews demonstrates that some existing HIV testing services are failing to meet the needs of trans people. Solutions such as staff training, or designing services with input from trans people, could help to redress the balance. 

What’s next?

The research team is writing up the results of the wider study, which also included 10,017 men who have sex with men. 

However, they say the results published so far show that HIV self-testing is effective, increases HIV testing among men who have sex with men and trans people, and should be implemented.

Further monitoring is needed to ensure that people who test positive can access health services, the researchers say. Nobody in this study tested positive so access was not explored. The researchers say more work is also needed on HIV testing among trans women and non-binary people. 

You may be interested to read

The paper: Witzel TC, and others. Impact and acceptability of HIV self-testing for trans men and trans women: A mixed-methods subgroup analysis of the SELPHI randomised controlled trial and process evaluation in England and Wales. EClinical Medicine 2021;32:100700

The systematic review that preceded the paper: Witzel TC, and others. Comparing the effects of HIV self-testing to standard HIV testing for key populations: a systematic review and meta-analysis. BMC Medicine 2020;18:381 

HIV Self-Testing Research and Policy Hub: information about HIV self-testing internationally. 

Together We Can: information provided by the Terrence Higgins Trust about HIV self-testing and how to order one from the charity. 

 

Funding: This research was funded by an NIHR Programme Grant for Applied Research Programme. 

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Commentaries

Study author

It’s now time to implement the results on HIV self-testing. It increases uptake among men who have sex with men and trans people. There is still a question about whether people who self-test can then access clinical services. But further delays before introducing self-testing will lead to missed opportunities to expand testing among the most marginalised groups.

Self-testing has a huge role to play, but it’s also important we continue to have bricks-and-mortar services. There are more learning opportunities at clinics, and losing that would be a real shame. Much of sexual healthcare has moved online during the pandemic; fewer services now see people face to face.

The worry is that self-testing will replace clinics. Self-testing can and should expand testing dramatically but should not be the only method we rely on because it doesn’t meet the needs of everybody.

I would like to see a considered framework for different priority groups, including interventions that increase acceptability or uptake in different subgroups. We can package self-testing in all sorts of different ways – it’s very flexible.

Charles Witzel, Assistant Professor, Department of Public Health, Environments & Society, London School of Hygiene and Tropical Medicine

Terrence Higgins Trust 

We welcome NIHR’s research which looks into ways of increasing HIV testing amongst trans men and women. Historically, trans people’s experiences of HIV have been understudied and almost invisible – it took until 2015 for diagnosis rates among trans people to be included in annual statistics on HIV.

The research shows that self-testing is an acceptable option for trans men and women, however improving access to self-testing alone is not enough to improve HIV diagnosis rates in trans communities.

It is crucial that frontline staff in all healthcare settings have access to robust LGBT+ inclusive training to ensure they have the knowledge and skills necessary to meet the needs of trans, non-binary and gender diverse service users.

The only way to ensure that the needs and concerns of trans service users are fully understood and catered for is to place trans-inclusion at the forefront of HIV and sexual health services.

Michael Brady, Medical Director, Terrence Higgins Trust, a charity that helps people come to terms with an HIV diagnosis 

Clinician 

This paper builds on the confidence I already had that self-testing adds another dimension to scaling up HIV screening. Traditional services are over-burdened, and seen by some clients to lack confidentiality, convenience and privacy. 

The Martin Fisher Foundation, for which I’m a Trustee, has distributed HIV self-tests through vending machines since 2017 so it is reassuring to know this approach is safe and effective. We have now launched machines which also distribute STI kits, to counter concerns that people may be less likely to access STI screening services if they feel reassured by a negative HIV test. I am encouraged by the lack of negative events in this study such as in condom use, or social harm.

This paper should increase confidence among services, healthcare professionals, commissioners and the public, that self-testing for HIV can support more people from key populations to test. If we are to reach zero new HIV cases by 2030, the ‘menu’ of testing options needs to be broad to fit everyone’s requirements. Self-testing is an important part of this.

Gillian Dean, Consultant in HIV/GU Medicine, The Lawson Unit, University Hospitals Sussex NHS Foundation Trust 

Member of the public 

This paper is interesting, informative and could be very timely. People have got used to self-testing for COVID, which could make the idea of self-testing for HIV even more acceptable.

One concern is that self-testing may have little impact on stigma. Should a partner discover that someone has been self-testing, perhaps for the first time, it might raise doubts over loyalty, and result in physical or emotional harm. I note that there was little impact on social care, but this was dependent on patient reporting.

Another issue is that people who self-tested were less linked into HIV care, presumably because they carried out tests at home rather than in clinical settings. They might also find it harder to access psychological care. I hope these issues can be addressed.

Margaret Ogden, Public Contributor, County Durham