Stop the Stigma: Why This World Aids Day Must Be About Communities as Well as Clinics

What do we mean by stigma? What does this word signify? It's one we hear a lot in all sorts of contexts, but what particular impact does it have upon those living with HIV? Why is it such a deterrent when it comes to taking a test?

After spending the week campaigning, telling everybody that HIV testing saves lives, and after telling each and every one of them that people living with HIV can now live a full life with a normal life expectancy and little prospect of infecting their partners; I think I need to pause and reflect on a patient seen in the clinic yesterday.

I guess it's easy to think that stigma isn't a problem when you're surrounded by positive advocates, some of whom have made that huge jump to "come out" about their status. Others are still not ready. Unfortunately it's true that those people who have come out are very much the minority. It saddens me that the person I was talking to today is pretty much isolated and alone in a community where probably one in every thirty people are also positive. Yet each believes that they are the only one.

The fact is, HIV associated stigma is a very real and pressing public health problem: one in five of those who are living with HIV in the UK do not know they are infected; that means they cannot access today's life-saving treatment, and may unknowingly pass on the virus to others. To reduce the number of undiagnosed individuals - and improve peoples' health and lives - we need to test more. And to do that, we need to overcome the stigma that prevents people from testing.

But what do we mean by stigma? What does this word signify? It's one we hear a lot in all sorts of contexts, but what particular impact does it have upon those living with HIV? Why is it such a deterrent when it comes to taking a test?

Our charity benefits from the support, input and activism of people living with HIV. Our positive ambassadors are individuals who have disclosed their status publicly, often expressly to combat precisely the prejudice that can mean for many the simple act of being honest about a diagnosis can lead to ostracisation and worse.

That makes them excellent people to ask about stigma - why take our word for it? Simply listen to the people who have lived with HIV - and, perhaps, with stigma - for years.

"Stigma kills communities," Angelina tells us. "Stigma prevents people from testing. It prevents people from accessing health and social care services, and from staying engaged in these vital, life-saving services if they do reach out."

Perhaps most crucially, Angelina has a stark message in the face of all the good news we have today about treatment as prevention, about drugs which reduce a person's viral load to undetectable levels: "We are just not going to medicalise ourselves out of this epidemic," she insists. "We need an end to stigma."

Angelina is right. Medical science is of course absolutely key to beating the virus; but individuals are infected in social contexts, and those environments have a huge influence upon health outcomes. It doesn't matter how good our medicine is if people can't or won't access it.

How do we tackle this invisible pressure, then? Perhaps we have to begin by understanding how it starts. "It comes from general ignorance and misunderstanding," another of our ambassadors, Kev, suggests. "Maybe this stems from the original 80s ad campaigns. HIV seems to bring a panic in naive people who don't know about current medicine and believe that death is imminent whenever they see those three letters."

Kev has a point: the last national, general awareness media campaign about HIV focused on the "silent killer" that was AIDS. Its main image? A tombstone. Saving Lives promotes good health, open dialogue and positive messages. Why? Because, as Kev says, "HIV is still not openly talked about, really - down the pub or in polite conversation.

"The worst thing is that we still don't have an attitude to meds or checking one's health that is universal. We could end HIV within a generation. The biggest effect of the stigma is that it just puts too many people off dealing with their health proactively."

But how? I hear you ask. It's an obvious question for someone who hasn't experienced HIV stigma: how can other people's opinions matter so much that you would risk your health, and that of your loved ones? Another of our ambassadors, Cathy, is working on a PhD for which she has interviewed many individuals living with the virus. Her answer really cuts to the heart of this question:

Stigma has the capacity to shrink a person's ability to live fully, authentically and with integrity. The reality of HIV-related stigma is that it is an oppressive power which unduly forces people to live unintegrated lives. Because I feel unable to live openly as a person living with HIV, this shapes my experiences and identity in a particular way. There is nothing more destructive than stigma because it takes away choice, and reduces a person's sense of self in relation to others. Living with the stigma associated with HIV, is more challenging than living with HIV itself, because it strips my personhood, disempowers me from being all that I could be as a person living honestly with HIV.

And that's why people choose not to know.

"Stigma kills!" agrees Lizzie, a heterosexual woman who contracted the virus from her partner - who did not know he was positive, and whose status Lizzie only learned about when he passed away. "Fear of the stigma prevents testing and ultimately, that kills and leads to onwards transmission.

"That same fear also leads to poor mental health for many diagnosed positive people, living with the weight of perceived stigma influencing their daily lives and decisions."

It is this complex of social, cultural and personal pressures which we must combat if we are finally to win the fight against HIV. By promoting discussion of the virus as an everyday topic of conversation - by, as Saving Lives does, bringing HIV out of the hospital and into the football ground, the gig venue, the tabloid newspaper - we can change the language around HIV, and help people think about it in new ways.

If we can achieve a change in the character of the public image of HIV - simply put, if we can update that image, bringing it up to the present day instead of stuck in the past - we can lead people into testing because they will feel no judgement for doing so. The medical benefits of early diagnosis are clear and overwhelming - we must remove the cultural barriers which still hold so much sway.

We should also strike a positive note, however - it's World AIDS Day, after all, and that means we need to look forward as well as back. Another of our ambassadors, James, got in touch with us to argue a little for how far we have come. "I remember a friend saying 'every cloud has a silver lining,'" he says about the day of his diagnosis. "He was referring to the regular health checks and blood tests you get as a result of the diagnosis.

"My own silver lining is the man I met four years ago and recently got engaged to. A man who loves me for who I am. Being HIV-positive encouraged me to be me, and love myself so that someone else could genuinely love me back

"Stigma? What stigma?"

We've made such progress. We can absolutely achieve the task which is left to us. And yet I return to that patient I saw yesterday: the stigma that exists within her community keeps her terrified of even coming to the clinic. Without a doubt, I think we are now in a situation where the medicines - our actual drugs - are excellent, the care is fantastic, the prognosis excellent. But still people will die because of HIV-related stigma.

Consider all that you've read above and ask yourself: when you or a friend or just someone on the same bus or train as you make comments such as "ew, they have AIDS" or "well they deserve it" or "it's only gay men, that has nothing to do with me", think a little about how that might make people living with HIV feel.

You probably know a couple of people already who have HIV but may not feel comfortable enough to tell you, or anyone else, about it. This World AIDS Day, let's stop the stigma and try to make life for those living with HIV - either knowingly or otherwise - that little bit easier. Everyone's health will benefit.