By Ruth, a patient
Pre-exposure prophylaxis (PrEP) medicines, when taken correctly, are around 99% effective in preventing HIV. This game-changing treatment should be available from community pharmacies to protect groups at risk of HIV today, but in my experience, PrEP can be very difficult to access.
I have lived in the UK for the last 14 years but grew up in Zimbabwe in the 1980s when HIV was a death sentence. Here, HIV is still seen as a condition that affects gay men and how it affects other communities, especially African women, simply isn’t taken into account by service providers.
Why I needed PrEP
Two years ago, at the start of a new relationship, I got an HIV test. My partner later visited Nigeria, where I discovered he has had several sexual encounters with many different women. I wanted to leave the relationship, but I needed to first protect myself from HIV infection while safely navigating my way out.
I’ve always supported the use of protection, but in some situations that’s impossible. So, I tried to get PrEP but despite my high risk of contracting HIV, I was passed between centres, clinics, and even A&E. No one would really listen to me and time was of the essence given the window period within which you need to start the medication.
Cultural competence
Eventually, after speaking to a nurse who was adamant that I didn’t need the medication, a doctor from one of the sexual health clinics called me, but I couldn’t speak openly because my partner was there, so they dismissed me because I couldn’t advocate for myself. They didn’t ask if I was OK or needed help – they didn’t ask the questions in a way I could have given yes/no answers to indicate that I was seeking help without alerting my partner who was present at the time.
I felt totally let down, vulnerable and with no recourse. At one point the Doctor even asked why I was still sleeping with my partner and having unprotected sex as if I had a choice. There was no cultural understanding, so I couldn’t trust any of the services. Basically, I was told to face the consequences of continuing my relationship, and they would not give me the medicine that would protect my health as they felt my circumstances didn’t qualify and I was not at risk in their view.
What do you do if the person you seek help from denies you that help, based on their own personal bias? How many other people are struggling and not being offered PrEP in the first place? There should be no judgement: you never know if someone has had sex by choice, force, or fear. I’m staggered that health professionals can put individuals and families at risk like this.
Getting help
Eventually, I got help from Burrell Street Sexual Health Clinic in London who helped. Burrell Street supports women needing PrEP and they gave me a month’s supply. Their pharmacist calls me with test results, books follow-up tests and provides me with PrEP. I can still continue with my life and no one knows I’m taking PrEP.
A referral to Mosaic also provided me with protective strategies because abuse comes in different forms and breaks you down in different ways. It’s not always possible to stand up for yourself - sometimes you need to buy time, and PrEP was a vital part of that for me.
The role of pharmacy in providing PrEP
There’s not enough awareness and information about PrEP: many people don’t know anything about it or like me, think it’s for emergencies only, or that they can only take it for a short time. There should be a structure in place to access PrEP easily, similar to the provision of emergency contraception at your local pharmacy.
Going to my GP would not have been anonymous and I didn’t feel comfortable doing that. A community pharmacy is better - you can go anywhere, outside of your local area if necessary - and it’s judgement-free.
Accessing PrEP from a community pharmacy would have meant less time looking for services and queuing waiting to be seen, as well as far less worry and anxiety. I could have been treated and got on with my life.
A caring pharmacist made all the difference
If you don’t help someone prevent HIV, then someone can contract and spread HIV, at a huge subsequent cost to the NHS.
In my experience, getting access to PrEP is currently a lottery, and this isn’t acceptable. If I hadn’t found that caring pharmacist, I might not be here and healthy today.
We want to encourage voices that express the diversity of lived experiences in the profession as part of our inclusion and diversity work. If you’d like to share your story, contact [email protected] or get involved through our ABCD group.