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Stigma, Complacency and Ignorance in the Fight Against HIV

By June 1, 2013 January 28th, 2015 No Comments

Originally published at Huffington Post:

What a week it has been. We’ve been involved in promoting HIV, Hepatitis-B and Hepatitis-C testing program at Birmingham Pride. We’ve launched a GP testing campaign in Nottingham. And, of course, I’ve been treating patients in the clinic.

We had mixed emotions at Pride. From the enthusiasm and dedication of the Saving Lives volunteers who gave up their spare time to try to convince people to test, to the hard-working commitment of the NHS staff undertaking those tests, it was a weekend of great successes. We performed over 150 dry blood spot tests across the two days of the festival, and we look forward to the results: even one positive result could be potentially life-saving, and could well be a case we would not have otherwise detected.

On the other hand, there was also a sense of disappointment at the complacency of some of the Pride revellers. There were many comments to the effect that, “I don’t want to test, I don’t want to know, and I don’t care if I am positive. There’s good treatment available now, isn’t there”

Many younger gay men these days have not seen their friends die of AIDS-related illnesses, and there certainly isn’t the fear around HIV which their once was. There is a difficult balance to strike here: we don’t want to stigmatise HIV further as some terrible disease of which we should all be terrified which vilifies those who have the infection, yet at the same time it is difficult to combat the damaging “I don’t care” attitude without emphasising the serious nature of the HIV infection.

In a different part of the country, meanwhile, Carl Froch – the new IBF and WBA super-middleweight boxing champion of the world – is lending his support to our awareness campaign in his hometown of Nottingham. In a city with one of the highest rates of undiagnosed and late diagnosed HIV and in the UK, we’re in a different setting again: trying to raise basic awareness of a condition to which most young people have had very little exposure, either at school or in the media.

Sporting stars such as Carl – and other ambassadors of Saving Lives such as Darren Bent,Jack Butland, and Sally Walton – are doing a huge service in normalising HIV amongst young people of this sort. If they see their idols supporting a cause which has so long been thought to be in the realms of gay men and Africans, it goes a long way to trying to beat the stigma associated with this condition.

Which brings us right down to the patient level. Of the more than a thousand patients which our team look after, only a handful will disclose their status, for fear of the repercussions (perceived or real) which this diagnosis may still bring. It can be worse in some cultures: many of my African patients share the same diagnosis with many of the people who sit in the same congregation as they do, and yet many are isolated and lonely, feeling that they will be rejected by their friends and families if others were to know about their secret.

What is so interesting is that of those people who eventually do ‘come out’ as HIV-positive, in actual fact and generally speaking, in this country the reactions of friends and family have been very positive. This is, however, highly variable and people in different parts of the country or world may have very different experiences – as we recently witnessed in a trip to China, where a positive diagnosis is very much considered something to be ashamed of.

This leads me to introduce you to a very newly-diagnosed patient, whom we shall for now refer to as ‘TJ’. Every so often, you meet somebody who never expected an HIV-positive diagnosis, who didn’t fit in to the classical ‘at-risk’ categories. Of course, why should they? Ultimately, the biggest risk factor for contracting HIV is having unprotected sex – and how many of us have not done that at some point in our lives?

TJ is a middle-aged, Caucasian male. He’s married with two children. He lives in a town very much like yours, in a community very much like yours. He has agreed to talk about his experience from the point of his diagnosis, and is allowing us to follow his journey as he progresses through that diagnosis to starting treatment and then to living with HIV on treatment. He’ll discuss the impact of his diagnosis on himself, his family and his friends, and his life.

Here is a short excerpt from his first blog:

Three-four months ago I took the decision to seek professional help and after numerous blood tests at my doctors, I was referred to specialist at hospital. It wasn’t long before I received the news and yes of course it was a shock but ironically I was just relieved that I realised what it was that was making me feel like I did. Obviously, the specialists did their further tests, prescribed a program of tablets and more’s the point installed in me that this isn’t a terminal illness as long as do something about it sooner rather than later. Having had the timelines explained to me I soon realised how close I came to the point of no return and that’s inspired me not having my mum bury her son, not having the kids fatherless or leaving a widow behind me.

You can continue to read TJ’s blog at the Saving Lives website. I’m still not sure how we get over these problems of ignorance, stigma and complacency. They can seem mutually reinforcing: combat complacency and you risk increasing the fear factor; try to normalise HIV and you risk further entrenching the “I don’t care” attitude we found at Pride.

But at Saving Lives we believe that education is the silver bullet: reduce ignorance, and both stigma and complacency can be fought at the same time. Stories like those told by X, and the work of all our volunteers, ambassadors and advocates, can raise awareness that today’s treatment can save lives, but only if we diagnose HIV early enough. We can normalise HIV and emphasise the importance of action simultaneously. So thank you, as always, to everyone who is helping us achieve that aim.

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