World AIDS Day: Alan Spink, community services manager at local HIV charity the Sussex Beacon and supporter of National AIDS Trust

Alan Spink, community services manager at local HIV charity the Sussex Beacon, is also a supporter of National AIDS Trust, the UK’s HIV rights charity.

Alan answers a few questions ahead of this year’s World AIDS Day, which takes place Sunday, December 1.

What do you do for a living?

I work as a community services manager at an HIV support organisation in Brighton – the Sussex Beacon. My team of five and I are constantly busy, with referrals coming in all the time, and demand just keeps growing. Brighton has the oldest population of people living with HIV in Europe, and as they age, new challenges arise – not only around HIV but also because of the economic crisis and ongoing impacts from the Covid-19 pandemic. More people are now reaching out, saying, “Actually, I do need some help.”

We’re also actively seeking out people in rural areas who may be isolated, people who have been hiding away for a long time but actually need support.

How did you get involved with HIV advocacy work?

About nine or ten years ago, after living with HIV for 21 years, I finally overcame my own self-stigma and came out of hiding. I like to say I came screaming out of my “HIV closet”! Before that, I was on a path toward a major breakdown. I hid away after my diagnosis, and a relationship I was in allowed me to avoid confronting my status. But when that relationship ended, I was devastated and saw only darkness ahead.

How did you begin to find the support and strength you needed?

During one of my clinic visits, I broke down, and they connected me with an HIV psychologist, who helped me enormously, along with my HIV consultant. Slowly, I gained confidence by speaking to groups of GPs learning about HIV and by participating on a patient panel for medical students at Sussex University. Eventually, I was encouraged to train as an HIV peer mentor, which I did, and I began mentoring others. Over those two or three years, my life changed completely as I faced and managed my status.

Did speaking openly about living with HIV bring any surprising reactions?

Yes, definitely. I even appeared on the local BBC, talking about a stigma campaign I’d worked on. At first, I was nervous about being open about my HIV status on TV, but the response was so positive. Neighbours and others who knew me greeted me warmly. “I saw you on telly,” they’d say with a smile. One neighbour even asked me to explain HIV to him, which I was happy to do. That experience showed me that once you overcome self-stigma even once, it’s like opening a door that stays open. You can step in and out of it as you choose.

What keeps you motivated to support others with HIV?

Since that time, I’ve developed a passion for supporting others living with HIV. I’m outraged by the injustice and inequality our community faces, so I do everything I can to raise awareness. I found my voice, and I use it for those who aren’t yet ready to use theirs.

What do you believe is at the core of the issues facing people with HIV?

Stigma – that’s really at the root of it all. Self-stigma, institutional stigma, all kinds of stigma. It’s a constant battle. Right now is a critical time. The third sector is under increased financial pressure, and we’re fighting to keep the services that our clients rely on. Too many charities and hospices are closing or are at risk.

If there’s one message you’d like people to hear about HIV, what would it be?

If you haven’t been tested, get tested. But also know this: if you’re not living with HIV, you’re not going to get it from me or any of us. Stop stigmatizing, stop singling us out. Either support us or leave us alone.

We need support because of what we’ve endured over the last 40 years. Many of us are aging and get no recognition for the comorbidities, the impact of toxic medications, or the societal stigma we’ve faced year after year. It’s exhausting to have to prove to people, like those at the DWP, every couple of years that we’re living with a virus that affects us daily. It’s a strain and a disservice to everything we’ve been through.

What do you see as the future of services for people living with HIV?

There are so many unresolved issues in my clients’ lives related to HIV that need attention and solutions. We must protect and support our services, especially if the goal of zero transmissions by 2030 is to be taken seriously.

Alan is a supporter of National AIDS Trust – the UK’s HIV rights charity. You can donate here to support their work this World AIDS Day and beyond.