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Invisible No Longer: our project on women and HIV

Invisible No Longer, our project on women and HIV


We’re asking women affected by HIV to tell us their experiences for our Invisible No Longer project as we advocate for change.

HIV and Women: Invisible No Longer is a one-year project led by Sophia Forum and Terrence Higgins Trust.

We aim to shine a spotlight on women affected by HIV by collecting information about their experience. One of the ways we’re doing this is through two surveys - one for women living with HIV and one for women not living with HIV who are worried about having HIV, or want to protect themselves from having HIV.

HIV affects us differently as women as we have our own unique needs. We need to make sure that those making decisions about HIV services are aware of these needs.

It is our human right to feel confident enough to say what we want for our everyday lives and how we would like to be supported to live well. However, for us as women, it can be difficult to feel like we can speak or have the opportunity to do so, which means we can find it hard to participate. This happens because we often face gender inequalities and other intersecting issues such as violence, poverty and caring responsibilities.

So it’s really important that we fill in these surveys. Although we are all women, we have different needs and ideas depending on factors like our sexuality, culture, ethnicity, age and environment. By collecting this information, we’ll not only have a better understanding of the situation, but also have a collective voice that’ll allow us to advocate for change.

Our entire research and the surveys are confidential because, for some women living with HIV, fear of being identified and the stigma of HIV or immigration concerns can make us anxious about participation. So the information we’ll collect won’t identify who you are, but will provide us with useful data about personal experiences and what works best for you.

To make it as easy as possible to get your voice heard in the way that best suits you, we’re making the surveys available both online and in paper form. The surveys are online here:

1. Survey for women living with HIV.

2. Survey for women not living with HIV, but who are worried about having HIV or want to protect themselves from having HIV.

If you’d rather fill in a paper copy, please email Longret.Kwardem@tht.org.uk.

Let us know what is important to you, from your experiences of living with HIV or staying HIV free, to the services you have used and what they’ve been like. Also tell us about what the challenges are for you and how you’d like to be supported.

It’s also important to carry on discussions about our quality of life as women. Use the surveys as an opportunity to give your views on topics like:

  • What’s it like taking medication?
  • How easy is it to get mental, emotional and physical care?
  • What are our sexual and reproductive health needs?
  • What other issues affect our ability to live well with HIV? Or keep ourselves safe from having HIV?

The project will conclude in spring 2018 with a report that will set out clear recommendations for policy and service development. This will also provide us with evidence we can use to push for women to remain a priority in the response to HIV and the management of the condition.

Ultimately these surveys are a reminder that, as a woman, you are not alone and it is time for us to be visible. Give your voice!

To learn more about the Invisible No Longer project please email Longret.Kwardem@tht.org.uk or see our Invisible No Longer campaign page.

Longret KwardemLongret Kwardem is a Research Officer in the Policy and Involvement team at Terrence Higgins Trust.