Why the HIV conversation is slipping and why that should worry every one of us

By Jacquie Richardson, CEO of Positive Life NI

the HIV prevention medication.

These aren’t just small misunderstandings. These are myths that destroy confidence, perpetuate stigma, and stop people from getting tested or accessing life-saving prevention. And we are seeing that play out in real time.

Most importantly, this lack of awareness and understanding puts forward a very real chance that HIV numbers could start to rise again –just when we have a zero goal in our sights.

Stigma is alive and well

Let’s not kid ourselves - stigma is still the biggest obstacle to progress.

When this survey asked respondents what words come to mind when they hear “HIV,” those who had heard of HIV responded with: AIDS. Death. Illness. Sex.

More than 70% said people living with HIV face negative judgement. Over half agreed they probably feel ashamed.

I don’t blame people for these associations. I blame decades of silence, patchy sexual health education, and an absence of awareness campaigns.

I also blame under-investment in community and voluntary organisations who do this work daily and are now facing extinction – that’s us.

This is about all of us

And yes, I mean all of us. HIV is not a “gay man’s issue”, but gay, bisexual and men who have sex with men remain disproportionately impacted and still carry the burden of stigma. HIV does not discriminate. Ignorance does.

And this ignorance is growing, not shrinking. If we don’t act now, we risk reversing the progress we’ve made over 40 years. We risk losing the momentum needed to reach zero new transmissions by 2030. We risk leaving a new generation vulnerable and ill-equipped.

So, what do we need?

We need to stop pretending this issue is “sorted” or “historic” or that “it doesn’t affect me.” We need to keep the foot down on the pedal of education and awareness.

Positive Life is doing all it can. But our work is constantly under threat.

We are hanging on by a thread. And I say that with no drama - just brutal honesty.

We need:

• Public education that matches the scale of the problem.

• Government-backed awareness campaigns to replace fear with fact.

• Funding that sees HIV support services as part of the health service, not an afterthought.

• Political will to finish what we started: ending new transmissions by 2030.

Because make no mistake - every new case of HIV costs. It costs the NHS. It costs the person diagnosed. It costs all of us in lost potential, lost opportunity, and prolonged stigma. But here’s the truth: the work we do saves the health service money - now and in the long term.

Every new HIV diagnosis leads to a lifetime of treatment that can cost upwards of £400,000 per person. Prevention, early diagnosis, and mental health support are not just the right thing to do - they’re economically sound.

For context, the cost of HIV medication alone for one person is enough to core fund Positive Life for almost four years. That’s four years of education, testing outreach, therapy, stigma reduction, and community support - all of which reduce hospital visits, improve medication adherence, and ease pressure on frontline health services.

We aren’t a cost to the systemwe’re part of the solution. 80% of our new referrals come through health care settings – people we help are kept out of crisis. We take some of the most vulnerable people in our community and make sure they don’t fall through the cracks.

If we vanish, that burden won’t go away - it will fall squarely on other parts of the health system, at a much higher price.

So yes, we need money. But more than that, we need people to understand the value - financial and human - of what we deliver every day.

Let’s not lose this fight because we stopped talking about it.

Let’s choose to respond with empathy. With facts. With action. Let’s not look back in ten years and ask why we didn’t do more to end HIV.

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Jacquie Richardson is the CEO of Positive Life NI, Northern Ireland’s only charity dedicated to supporting people living with and affected by HIV.