As part of ILC’s new project, HIV and Long Lives, Anna van Renen has spoken to people in various countries, and one issue remains the same: older adults and women are left out of testing and screening. As a result, she thought she’d investigate this for herself and so with two friends spent a morning visiting a few London sexual health clinics to see what happened if they asked for a routine check-up. This blog published in advance of World AIDS Day 2024 describes their experience.

A bisexual woman, a polyamorous woman and a gay man walk into a sexual health clinic. No, this isn’t the start of a distasteful joke. It’s how we spent one morning last week.

This past month, I have been conducting one-to-one interviews to better understand the challenges associated with HIV and ageing as part of our new project, HIV and Long Lives. I have spoken to people in Australia, Canada, the Netherlands, the UK and the USA, and despite some differences in the way countries manage HIV care and treatment, one issue remains the same: older adults and women are left out of testing and screening. In the UK, 42% of women feel there are barriers that prevent them from testing for HIV. Yet worldwide, women make up more than half of all people living with HIV.

I have been fascinated with ethnography since reading Clifford Geertz’s famed Deep Play: Notes on the Balinese Cockfight in my first year of university. As more and more people highlighted the issue around women being left out of HIV testing, I decided to investigate for myself.

As someone who identifies as queer but has been in a monogamous, heterosexual relationship for over four years, I knew it was unlikely that I would be considered at-risk for HIV or offered testing. That’s why I enlisted the help of two friends: Harry, a single gay man, and Catherine, a consensually non-monogamous woman. Together, we braved the blistering cold to go to a sexual health clinic and each ask for a routine check-up.

No symptoms, no service

Upon arrival to the sexual health clinic, we filled in some forms with our basic information and noted any symptoms we were experiencing (none of us had any). To see if I could remain somewhat anonymous, I left out my birth date, but was instructed to fill it in before they would look at my form.

As we were all asymptomatic, we got turned away and directed to a free at-home testing kit service. The person who spoke to Catherine explained that she could fill in the order form online there and then, and he could give her a test. The person who spoke to me simply directed me to the website URL. The person who spoke to Harry tried to tell him about the at-home test service, but Harry, who passes out at the sight of his own blood, was understandably unimpressed at the suggestion of an at-home finger prick test.

So, we set off again. At another clinic, Harry explained his fear of blood and was able to receive assistance being tested. With face-to-face interaction, he was given opportunity to explain any further concerns and speak about preventative measures such as PrEP, PEP and vaccination against Hepatitis. But again, I was turned away. Three more clinics, three more times I was turned away. There were no questions about my concerns outside of symptoms, no queries about my last STD screening, and no questions about my sexual history, in-person or on the forms in the clinics. I am a white woman with an accent that is almost British, a slight twang of something that people can never quite put their finger on, but if anyone asked, I would happily tell them I had moved to South Africa when I was 15 and lived in a country with one of the highest HIV burdens worldwide for 10 years.

I realised after a number of hours and a number of clinics, I was not going to be able to receive a screening without symptoms.

The pros and cons of postal testing

So, after a busy yet unproductive morning, I finally directed my attention to the at-home testing kit that each clinic had referred me to. This service requires you to fill in your postcode, address, name, date of birth, email and phone number. It then takes you through a questionnaire. The questions are personal, almost graphic at times. Whilst I understand that these questions are designed to assess risk, there is no ‘prefer not to answer’ option. A lack of anonymity may leave people feeling uncomfortable delving into information about their private sex lives. The kit must be returned by post.

The questions asked were somewhat similar to the questions that Harry had been asked at his in-person appointment, though the yes/no answer style left little room for nuance. For example, I was asked if I’d had sexual relations with someone from Sub-Saharan Africa. When I selected yes, it suggested I see a clinic about going on PrEP and see my GP for a Hepatitis B vaccine. Yet as I said, not only am I in a relationship with someone from Sub-Saharan Africa, but I myself lived there for a decade. I was surprised that the assessment did not consider my travel or residency history.

Once I finished the questionnaire, I had a list of diseases I should be screened for, and the option to order the test to my home in just one click. Here, it is worth noting that postal testing certainly has its place. For some, it may feel more private and discreet than walking into a sexual health clinic. It may be easier to access for those who work full time or have other responsibilities that make attending in-person appointments more challenging.

Yet, for all its convenience, postal testing is not a one-size-fits-all solution.

My experiment was centred around whether three different people with three different sex lives could get walk-in appointments at sexual health clinics. Particularly, I wanted to see if Catherine and I might be able to get walk-in appointments. My curiosity stems from a sobering statistic: over half of all women in the UK who are HIV-positive have experienced violence because of their status. And women who are victims of intimate partner violence are up to 48% more likely to contract HIV than those who are not. There is a cyclical link between domestic violence and HIV in women, and as a survivor of domestic violence myself, I cannot imagine being able to privately conduct a test in a space shared with an abusive partner. Of course, people can book appointments in advance, but for women in vulnerable situations this isn’t always a viable option.

In-person testing offers more than just results. Clinics provide an opportunity for patients to be connected with support services, such as those for domestic violence. They can offer hands-on assistance with the testing process, reducing anxiety and uncertainties. Patients can ask detailed, specific questions about their health – questions that a website’s checklist simply cannot accommodate. For example, I could have asked whether I need to consider a Hepatitis B vaccine if both my partner and I are HIV-negative.

When Harry received his results, he found out that whilst he was HIV-negative, he had another less serious STD. He returned to the clinic to get his antibiotics, and there was gently asked if he had ever been the victim of domestic violence or coerced sexual acts. He was once again given the opportunity to ask questions, seek assistance, and, if necessary, be directed to other services.

When dealing with sensitive health concerns, speaking face-to-face with a trained professional often feels more reassuring than filling out an online form. Clinics provide an environment where patients can comfortably explore a wide range of concerns. For many, they may be safer and more practical than home settings.

Postal testing kits and telemedicine certainly have their place in modern healthcare, but they cannot fully replace benefits of in-person care. A joint study from the Universities of Cambridge, Birmingham and East Anglia found that the vast majority of patients and healthcare workers prefer face-to-face consultations. This preference is especially significant in sexual health, where the stigma and discomfort surrounding STD testing can make compassionate, in-person support invaluable.

The bigger picture

But clinics are overburdened. There is only one free sexual health clinic in the UK that accepts walk-ins on weekends, and it is in London. The online service I was directed to is similarly limited to London. Free HIV postal testing kits are available in some other areas, but access varies depending on local authorities and these may be limited to at-risk populations. At Harry’s final visit to the clinic, when he picked up his antibiotics, they asked him to fill in a survey about his experience. They needed survey responses to keep funding to keep the clinic open.

So, the clinics are not at fault for my experience. The postal kit service has been set up to help manage the burden on clinics. However, as we approach World AIDS Day it’s clear that more must be done to advance progress on HIV care, treatment and prevention. Long-term investment from Government would allow for more clinics, extended hours and more staff to ensure that no one – especially women and older adults – is excluded from accessible, face-to-face testing and care.

Aging with HIV presents a growing set of challenges. Older adults living with HIV are at a greater risk of developing age-related comorbidities, such as cardiovascular disease, osteoporosis, and cognitive decline, often at earlier ages than the general population. Many were diagnosed in an era when HIV was considered a terminal illness, not a manageable chronic condition, and still face stigma when accessing care.

My experience was not unique, but I am privileged to already know my HIV status, be able to do an at-home test, and easily access other sexual health services through my GP. It’s critical now to ask ourselves how many people, particularly women, older adults, and those who don’t fit traditional HIV risk profiles, are still being left out of life-saving services and tests? The HIV and Long Lives project seeks to address these gaps by better understanding the unique challenges faced by older adults living with or at risk of HIV. On this World AIDS Day, we must commit to ensuring that HIV care and testing are accessible, equitable, and inclusive for all.

Names have been changed for privacy reasons.