Making women’s voices heard: Marie’s experience of accessing and being on PrEP

Sophia Forum co-chair Sophie Strachan blogs for the BASHH newsletter

Women at higher risk of acquiring HIV can benefit from PrEP, but take-up of PrEP among women in the UK and in other similar settings has been very slow. Sophia Forum has been campaigning for the last three years to ensure women are not left behind in PrEP access and their needs are included in commissioning.  A vital part of this is listening to the voices of women who have accessed PrEP, so we interviewed Marie, a PrEP user from London, to learn more about her experiences.

A large scale study of PrEP implementation is currently underway in the UK. The PrEP Impact trial opened to recruitment in late 2017, with an initial allocation of 8,000 places for gay, bisexual and other men who have sex with men, and 2,000 places for women, heterosexual men and trans people. PrEP is not available on the NHS in England, outside the Impact trial, as NHS England has not implemented routine commissioning, despite losing a court case brought by the National AIDS Trust, which establishes they are able to do so. Sophia Forum joins other campaigners in calling for routine commissioning of PrEP for all who need it by April 2019.

Few women have enrolled on Impact, despite women accounting for 26% of new diagnoses in 2017 in the UK, with 1,125 newly diagnosed women. Three Sophia Forum Trustees are members of the Impact trial Community Advisory Board. Through this and our other campaigning we have been working to ensure that women’s needs, priorities and preferences are included in PrEP rollout in the UK and also to address the lack of attention and inclusion of women in PrEP conversations.

Sophia Forum believes slow take up is due to lack of HIV risk awareness, as well as PrEP awareness, among women in England. We have therefore been running events and developed a leaflet and website, http://womenandprep.org.uk, providing PrEP information specifically for women, to address this. We are also planning further activities that will start to unpick and draw on experiences to help develop future commissioning of sexual health and access to PrEP for all women who need it. We are working to explore the reasons driving slow uptake of PrEP among women and the opportunities to improve access.

During the International AIDS Conference in Amsterdam in July 2018, we convened a meeting of PrEP for women advocates from low prevalence settings globally, to explore some of the common challenges and learning on how to address them. Drawing on global evidence, we are prioritising activities that support healthcare providers to initiate PrEP conversations with women, as this has been found to support more women to access PrEP. Peer-led mobilization and safe spaces to discuss PrEP have also been found to be effective, for example through a project by the ATHENA Initiative in Kenya and Uganda, that one of our Trustees led. In 2019, we hope to take this work forward to run a series of conversations that will start to unpick and draw on the experiences of women who are now accessing PrEP and the experiences of women working in and around the field. It is shocking that in 2018 the majority of women who might benefit from PrEP have not even heard of it, so are unable to assess whether it might be right for them.

Sophia Forum co-chair Sophie Strachan sat down with Marie (not her real name) a woman living in London and accessing PrEP. She was keen to share her story as a PrEP user to help other women who might be interested in PrEP. The following is a verbatim extract from a recorded interview with Marie in September 2018.

“I go to a local sexual health service in East London. I work as a sex worker and they run a really excellent service called ‘Clinic S’ which I would go to periodically to get a check-up. I’d gone this particular time as I was scared I’d been at risk of exposure to HIV. I saw a Nurse Practitioner who told me all about PrEP.

First and foremost, I wanted to reduce my risk of getting HIV, so it was looking after my sexual health and being safe. In my work I get clients who want to have condomless sex – for me that can put me at greater risk of HIV and other STI’s – so being told about PrEP was important as I can now look after that aspect of my sexual health.

On reflection I can see how little I knew about my potential risk of HIV. I really didn’t think I was at risk, even though I would see so many clients.

I’ve been taking PrEP for almost one year; it’s been an empowering experience knowing I can protect myself from HIV. Initially it did change my sexual practice. For the first 20 days of starting PrEP I continued to have protected sex.

After those first 20 days, other than my regulars, I’d average 1-2 clients asking for condomless sex per day. I did start having conversations about my clients’ sexual health. Most of them had never heard of PrEP and said they would like to take it themselves. Others started thinking I was HIV positive and walked away.

I personally feel no shame or stigma about taking PrEP – I see it as being sensible. I’m taking personal responsibility for my sexual health, preventing myself from getting HIV. I do understand the stigma that is associated with HIV, and a lot of the targeted work is towards the gay community, but they’re not the only community at risk of HIV. There are other marginalised groups such as trans people who need this information and prevention option.

 My first and only piece of information around women and PrEP was via the Sophia Forum leaflet and the website http://womenandprep.org.uk that was provided to me in clinic. I’ve taken it away and showed it to my friends, to help educate more people, as I see this is as a vital prevention tool in reducing HIV infections.

Starting PrEP has resulted in me accessing support from my sexual health clinic more than if I wasn’t on it. It continues to be a positive experience as I am in regular contact with the Nurse Practitioner, who I can contact at any time. I was offered support by the Health Advisors in the clinic as well; to be honest I was happy just speaking to one health professional, but that’s my own preference, it can be different for other women.

 I’ve been in contact with Sophia Forum for several months now and this is the first time I’ve been given the space to talk about my experience. We need more platforms, because we need to reach more people to inform them about PrEP, especially in the context of women. I feel every doctor and nurse should be educated to a level where they can speak to every patient about PrEP.”

Marie told us that she feels strongly that women should lead any work to reach women to discuss PrEP. She says that she personally wouldn’t feel safe or comfortable talking to men about this.

There are a range of reasons driving slow take up of PrEP among women at higher risk of acquiring HIV, including limited community-level interventions, women not being included or targeted, and outdated, sexist notions around risk. This is the first in a series of interviews and conversations to analyse why women are being shut out of the PrEP debate.

Marie’s story demonstrates the importance of services that are open, accessible and designed to meet women’s needs, and that provide a space to talk about PrEP and HIV risk. Health workers play a vital role in starting the conversation about PrEP – get in touch with us at info@sophiaforum.net to order copies of our PrEP for women leaflet for your clinic, and share the http://womenandprep.org.uk resource with your patients.

There is much work to be done around women and PrEP that will surely shine a light on women’s sexual health and autonomy on a much wider scale. This work is vital.

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