Discussing U=U in primary care

By the end of this section you'll be able to:

• Understand the importance of knowing about U=U and how it supports the relationship with your patients.
• Know how and when to raise U=U with your patients.
• Know how to talk about U=U to patients coming in for an HIV test.
• Better understand the correct language to use when discussing HIV with patients.

• Why it’s important for you to know about U=U.
• How it’s helpful to your relationship with your patients.
• Why it's important to talk about U=U in primary care settings.
• How to raise U=U with your patients when they haven’t come to talk to you about it.
• The importance of signposting to resources and further information, as well as having posters and leaflets in your waiting room.
• The relevance of talking about U=U to patients coming in for an HIV test.
• What not to say to people living with HIV, with examples of inappropriate language and behaviour.

The Positive Perspectives 1 study [PDF] surveyed 1,111 people living with HIV from nine different countries, including 160 from the UK. Of these, 283 (25%) respondents felt that better doctor education will reduce feelings of stigmatisation. From these:

• 184 (65%) believe more education is needed for GPs.
• 181 (64%) believe more education is needed for hospital nurses.
• 171 (60%) believe more education is needed for dentists.

The Positive Perspectives 2 study [PDF] surveyed 2,389 people living with HIV from 25 countries, including 123 from the UK. It found that 1,847 (77%) reported at least one issue they felt uncomfortable discussing with their healthcare professionals. This refers to education about HIV generally, not specifically about U=U.

In this study, those that reported being informed of U=U by their healthcare professionals had more favourable outcomes than those who were not aware of U=U.

The 2018 survey BHIVA conducted with its members of HIV clinicians showed there was a lack of consistency in how they shared the U=U message with people living with HIV.

Further research, which we conducted in November/December 2019 with people living with HIV, found this to be the case across all healthcare professionals. It found that the U=U message was being talked about least in primary care settings.

From the 104 people (34%) who heard about U=U from a healthcare professional, only 3 (1%) heard about it from their GP and only 5 (2%) had heard it from another health professional who was not an HIV clinician or HIV nurse.

The Positive Perspectives Policy Manifesto (2020) recommendations say: 'All efforts should be made to enable better, more horizontal and open dialogue between people living with HIV and their clinicians.

'People living with HIV must feel they are in a non-judgmental environment; they must be comfortable sharing with their clinicians all aspects relevant to their quality of life, treatment, care choices as well as information regarding U=U.

'This open dialogue should become the basis of informed discussions about care and treatment, resulting in better individual and public health outcomes.'

Dr Gardner is a GP and Director of the social enterprise Sexual Health in Practice (SHIP) that teaches GPs and practice nurses about sexual health in primary care.

In this video she explains how and when to bring the subject of Can't Pass It On/Undetectable = Untransmittable up with your patients.

In a survey we conducted in November/December 2019, only 1% had heard about U=U or Can't Pass It On from their GP, which is something that must be improved.

Knowing about U=U can have a profound impact on people living with HIV.

Discussing this with your patients shows you are up to date with your knowledge and concerned about their welfare.

Why patients think it’s important for healthcare professionals in primary care to talk about U=U

• Hearing nurses and doctors talk about U=U in primary care settings adds another layer of confidence that it’s not just something HIV specialists talk about.
• It helps to normalise HIV.
• It helps HIV-positive patients feel less ashamed so they are less likely to keep their status to themselves.
• It helps HIV-positive patients deal with the social aspects of their diagnosis.
• It educates people about what it is like to live with HIV today.
• It encourages people who don’t have HIV but may be at risk of HIV to ask questions about it and test as a result.
• It helps change the narrative around HIV.
• It empowers people living with HIV.

The benefits of an undetectable (or fully suppressed) viral load

• It protects the patient’s health from the negative effects of HIV.
• It prevents development of resistance to antiretrovirals. The virus is not replicating and therefore can't mutate.
• It prevents onward transmission completely.

How GPs (and other primary care practitioners) can discuss U=U with their HIV-positive patients

Suggestions of how to bring up the subject of HIV with HIV-positive patients that may not have come in to discuss this:

• 'While you’re here, do you mind if we take a few minutes to talk about how you’re getting on with your HIV at the moment?'
• 'I’m glad you’re here as I’ve been meaning to ask you about your HIV care.' 

In 2019, 97% of patients in the UK who were accessing HIV care had a fully suppressed viral load but it’s important to check that before you have the conversation.

Once this is confirmed, you could say:

• 'I can see from your records that your viral load has been fully suppressed for some time – which is great – so I wanted to be sure you were aware that this means that HIV cannot be passed on.'

Or it may feel appropriate to be led by the patient and ask an open question such as:

• 'How has your HIV control – your viral load – been most recently?', before confirming that the virus is fully suppressed and discussing U=U.

Or:

• 'Have you seen or heard anything to do with U=U or the Can’t Pass It On campaign?' and then discussing what this means after.

You may have concerns about getting difficult questions and feeling out of your depth when discussing this topic. This training and the links we provide can help you with these.

U=U is very strongly evidence-based as well as being a highly liberating and life-changing message for patients, so it’s important not to let any fears get in the way of delivering the message that when a patient has an undetectable viral load there is no risk of sexually transmitting the virus.

To find out more about this evidence, watch the video in the evidence behind U=U section. If you don't have time to watch the whole video, we recommend you watch the introduction, the Partner studies, how the evidence weights up and when U=U applies.

How to deal with difficult questions

If patients ask questions that you find difficult to answer:

• Watch our video on dealing with difficult questions.
• Suggest they talk about this in more detail in their HIV clinic appointments.
• Direct them to this website and the patient resources.

The positive potential for GPs to take a long-term condition approach to HIV care

An annual review of patients with HIV should include:

• Management of cardiovascular risk and other co-morbidities.
• Offering their annual flu jab.
• Annual cervical screening.
• Consideration of the psychosocial aspects, particularly anxiety and depression. The Changing Perception Report by Public Health England 2017 found that people living with HIV are around twice as likely to have issues with their mental health compared to the general public.
• Linking patients to the lifestyle change support and guided self-help that is available locally.

Relevance of U=U when offering HIV tests

If a patient needs an HIV test for any reason, you could say:

• 'It’s well worth knowing if you have HIV because you can’t pass it on if you’re taking your medication and your viral load is undetectable.'

Examples of when HIV testing is indicated in primary care:

• After determining relevant sexual risk, following rapid sexual health risk assessment (NICE, 2019).
• To newly registering patients in high-prevalence areas (Prevalence ≥2 per 1000 aged 15 to 59 years) (NICE, 2016).

What you can say to patients unwilling to take an HIV test

• 'We’re trying to do a lot more HIV testing, because if you’re living with HIV it is better to know about it. Early diagnosis and access to treatment means people stay well and can expect a long and healthy life.'
• 'The treatment is so effective that if you take it regularly and fully suppress the virus, we now know that you can’t pass HIV on to anyone else.'
• 'It’s always better to know than not to know, so I would always say if in doubt better to get tested.'

Other ways you can be involved in promoting the message of U=U

• Put up posters in reception areas and clinic rooms.
• Show PowerPoint slides for screens in reception.
• Mention it in your practice newsletter.

You can download posters and PowerPoint slides from our resources page.

As well as it being important for people living with HIV to know about U=U, advertising around this topic helps normalise HIV as a long-term condition. This can lead to patients being more comfortable to discuss HIV in primary care settings and approaching their GPs and practice nurses for testing.

What else you can do to get the U=U message out within primary care and beyond

• Discuss U=U with your colleagues and trainees.
• Bring it up at clinical meetings and in coffee rooms.
• Use the teaching resources on this website.
• Download the images and testimonials and share them via social media.

When we interviewed people living with HIV for this resource, they gave us some examples of inappropriate behaviour and language used in a primary care setting:

• Don’t ask HIV-positive patients how they got HIV unless it's directly relevant to the conversation you're having with them.
• Be sensitive when dealing with HIV-positive patients – don’t treat them differently to anyone else.
• Think about the language you use and don’t be awkward when talking about HIV; it’s just a medical condition like any other.

There are many more sensitivities around language when speaking with people living with HIV.

The People First Charter site has more information on the appropriate language to use, and what not to use, when talking to people living with HIV.

You can also read NHIVNA's full guide to what language to use and not use [PDF].

• Positive Perspectives 1 [PDF].
• Positive Perspectives 2 [PDF].
• NICE HIV testing guidelines.
• BHIVA HIV testing guidelines.
• BHIVA research with its clinicians by Dr Nadi Gupta – BHIVA’s position on U=U.
• Guidance for dentists.
• The Language of HIV – A Guide for Nurses 2019 [PDF].

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