Garry Brough, Lead for Peer Learning Partnerships and Policy at Positively UK, shares his personal journey of battling HIV and AIDS, becoming involved in HIV support services, and the significance of open conversation for eliminating HIV stigma.

Image credit: Garry Brough

Could you tell us a little bit about yourself and your career to date?

I grew up in South Wales and came to London in 1985 to study French, Italian and Linguistics at the University of Westminster. I graduated in 1991 and went to work in the film industry, becoming the Technical Manager for Sony Pictures UK. However, HIV-related ill health led to my retiring in 1997.

After a long and slow return to health, in 1999 I retrained and started volunteering as a Pilates instructor for the YMCA Positive Health HIV exercise referral programme that had got me back on my feet. I also co-founded Bloomsbury Patient Network within the HIV clinic where I received my care, delivering workshops and group support sessions for fellow patients within the clinic, as voluntary sector services were being closed. (I remained Chair of the Network for 20 years, stepping down in 2019 once its charitable status had been established).

By 2002 I was ready to take on paid part-time work at both the YMCA Positive Health Programme and the Bloomsbury Clinic, becoming the UK’s first paid HIV peer support worker within the NHS. I moved on from providing one-to-one peer support and training in 2008 when I became Terrence Higgins Trust’s Membership & Involvement Officer and Service Lead for their myHIV online support services, including the national online community forum, which I administered with a team of volunteers.

In 2015 I moved to Positively UK to take on the role of Training Coordinator of their national peer mentor programme Project 100. Being part of a peer-led organisation was important to me and working to ensure that 100% of people living with HIV in the UK had access to effective peer support was an unmissable opportunity. When the CEO left the organisation in 2018, myself and the Deputy CEO stepped up as Joint Interim CEOs and when she was appointed as CEO in early 2019 and I spent 6 months as Deputy CEO to maintain stability within the organisation. We then restructured the Leadership Team and I moved into my current role as lead for Peer Learning, Partnerships & Policy. The focus of my work today is to continue to work with local and national partners to initiate peer support programmes in both the voluntary sector and NHS services. I also manage two of our Fast-Track Cities Initiative projects which seek to engage and support people in their HIV clinics when they are experiencing challenges and stigma around living with HIV.

I have also been very active as a community representative on committees for HIV and health-related bodies such as the BMA, BHIVA, NHIVNA, BASHH, HIV CRG and London’s Fast-Track Cities Initiative. These all seek to ensure that people living with HIV are meaningfully involved in any decision-making that affects their lives.

What is your experience with HIV/AIDS?

I was diagnosed with HIV in 1991, at the age of 23. The prognosis then was that I would have approximately 5 years of life. I was extremely fortunate to have had the love and support of friends, colleagues, and family, all of whom I told about my diagnosis. Most people that I knew were not so fortunate and were often rejected or abandoned. I made a decision to do everything in my power to stay well and changed almost every aspect of my life to try to beat the diagnosis.

Despite choosing to adopt an extremely healthy lifestyle, my immune system continued to fail, and I received an AIDS diagnosis in 1995, when Kaposi’s Sarcoma, AIDS-related cancer, appeared on my skin and in my lungs. I started chemotherapy and radiotherapy (which lasted for two and a half years) and was lucky enough to still be alive to see the advent of effective HIV drugs in 1996.

I started anti-retroviral therapy on my 30th birthday in 1997 (a milestone I had been told would never happen). My recovery was slow and the early HIV meds caused significant side effects, but I changed drugs as better options came along and regained my strength with the help of the YMCA’s Positive Health Programme.

Peer support had been a key factor in getting me through the tough times and as I considered what to do with my new and unexpected life, it was clear to me that others were motivated by my experiences and survival. Being able to help others to adjust to their diagnosis made work feel more like a privilege than a chore and so I have spent the last 23 years trying to help others to find their own ways to live well with HIV.

What are the misconceptions about people living with HIV?

Public awareness of HIV today is very low, and with ignorance comes fear and discrimination, so there is still a great deal of stigma attached to HIV. While effective medication means that people can live a full and healthy life, the psychological impact of the diagnosis and both the expectation and unfortunate reality of rejection and discrimination can mean that people remain isolated and afraid to tell others. This is often compounded and exacerbated by additional and intersecting stigmas that relate to sexuality, gender identity, ethnicity, and migration status. And there are always people who feel that HIV is something that only ‘promiscuous’ people get and that they are not the sort of person who could get it, despite the fact that it is a virus which does not choose who to infect.

Most significantly, when it comes to reducing unnecessary fear of HIV transmission, we have a medical fact that is still not widely known or understood. When someone with HIV is taking treatment, the virus cannot reproduce and so when a blood sample is taken, the virus cannot be detected. This means that it cannot be passed on, even when having sex without condoms. This is known as U=U, or Undetectable = Untransmittable. In surveys of both the general public and in healthcare settings, a staggering 80% of people did not know this fact, which is why we still have people experiencing irrational discrimination, due to ongoing fear of HIV. While this is generally better understood within the LGBTQ+ community than the general public, sexual rejection is still a common occurrence. 

In your knowledge, what does your workplace do to ensure a safe and inclusive work environment for people living with HIV?

As the UK’s leading HIV peer support organisation, Positively UK is in a somewhat unusual position, whereby having HIV is a pre-requisite for most of our jobs, which is one of the reasons I was keen to work here.

Over 90% of our staff and over 60% of our Trustees live with HIV, so we have robust policies to support people to live well, including time off for medical appointments, any reasonable adjustments that might be needed, as well as external supervision for all our support staff. Although our organisation was set up to support women living with HIV (when it was founded as Positively Women, 35 years ago), we have been operating as Positively UK for more than a decade. We offer peer support to anyone that is living with HIV and have targeted support for women, young people, and the LGBT+ community.

What do you think is the next course of action to improve conditions for people living with HIV in the workplace and in wider society?

The Fast-Track Cities Initiatives (FTCI) across the UK and the HIV Action Plan both include goals to ensure that people living with HIV are able to access the care, treatment and support they need without fear of discrimination. While we are getting close to ending HIV transmission, eliminating HIV-related stigma is a far greater challenge, as public attitudes are slow to change.

There are new programmes being funded to address this, and FTCI London will be hosting a parliamentary launch of an HIV-Friendly Charter on November 29th. This will provide a suite of resources, including awareness surveys, policy documents, reporting pathways for discriminatory practice and both digital and face-to-face training which will include the experiences and voices of people living with HIV. Delivering these within the public sector will be the initial priority, so that health and social care settings, local government, the police force and other public-facing organisations are more sensitive to the needs and challenges. It is also intended to be used and implemented in the private sector, and we intend to go wider, to the general public, in the sharing and circulating of digital resources.

Surveys show that people who know someone living with HIV are far better informed and less likely to hold negative views about the condition, so being able to hear about HIV, from people who live with it, is key to humanising the condition and reducing the potential for people to feel that it’s about others who are not like them.

A couple of decades ago people would only whisper the word ‘cancer’, but with friends, family members, work colleagues and celebrities talking more openly about this, it has become a less stigmatised condition. We need to do the same with HIV, to become more visible, which is so thankfully happening. We do not need sympathy, as we can live fantastically healthy, productive and long lives, but empathy and understanding will be what gets us to zero stigma.

Useful links:

Positively UK 

FTCI London

U=U

 Join myGwork's World AIDS Day panel on 1st December to learn more about how we can better support people with HIV.