The patient's perspective

By the end of this section you'll:

• Know some of the ways that U=U impacts patients.
• Understand from a patient’s perspective how to convey the U=U message to your patients.
• Understand the impact of U=U on people living with HIV:
  • On self-stigma.
  • On adherence.
  • On sex lives and relationships.

• Different people living with HIV talking about U=U and what it means for them.
• The impact of the U=U message on self-stigma and adherence and the sex lives of people living with HIV.

Dean shares his experience of not believing a previous partner who told him they were undetectable before he became HIV positive. He reveals the effects on his mental health when he became HIV positive, the impact U=U has had on him and how it has helped with his self-stigma.

Daniel shares his story of needing constant reinforcement and reassurance about the U=U message.

We designed an online survey for people living with HIV that was live for four weeks in November/December 2019.

The survey collected qualitative and quantitative data about how people living with HIV heard about U=U, what they were told and what they felt about it.

309 responses were received:

• 151 (49%) of respondents were diagnosed over 11 years ago.
• 60 (19%) were diagnosed 6-10 years ago.
• 98 (32%) were diagnosed in the last five years.

For the purposes of our analysis, those diagnosed in the last five years were defined as recently diagnosed and those diagnosed 11+ years ago were defined as long-term diagnosed.

The survey found that:

• 91% of the recently diagnosed said they could have sex without worrying about transmission compared to 80% of the long term diagnosed.
• 74% of the recently diagnosed said it motivated them to take treatment compared to just 49% of the long term diagnosed.
• 72% of recently diagnosed said it made them feel better about having HIV compared to 65% of long term diagnosed.
• Only 41% of both recently diagnosed and long term diagnosed said it gave them the confidence to disclose.

In this video we hear more about the impacts of HIV on these areas.

Examples of what people say U=U means to them:

• 'It's empowering.'
• 'It means I can have sex without feeling guilty.'
• 'It's makes me feel less afraid and nervous.'
• 'It's given me more confidence as a women, as a mother and means I can talk to my children more openly.'
• 'It hasn’t made a difference to me in terms of navigating my sex life – people still judge me.'
• 'I feel relieved, confident talking about my status, and free.'
• 'It makes me feel happy.'

Examples of how people living with HIV would like you to talk about HIV:

• Be kind and compassionate, and don’t make a joke out of anything.
• Don’t wait for the patient to ask a question because they might say they are happy and comfortable and know everything but they might have a thousand other questions that they need you to answer.
• Hammer the U=U message hard because it took me so long to accept it as a normality. I really didn’t believe my doctor for a long time.
• Don’t just ask patients about their health. Ask: Are they working? Do they have the support they need? Are they eating well? Do they have enough money to be able to eat well? Do they have a roof over their head? Is it secure? All of those things might help them stay undetectable and live healthily with HIV. If those are not all attended to, they're less likely to remain undetectable and potentially could pass on the virus.

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